People Of Color With Albinism Ask: Where Do I Belong?

People Of Color With Albinism Ask: Where Do I Belong?

Brandi Green negotiates the world as an African-American woman with albinism. Courtesy of Brandi Green

Growing up, Natalie Devora always questioned how she fit into her African-American family.

“Everyone was brown, and then there was me,” Devora says. “I’m a white-skinned black woman. That’s how I navigate through the world. That’s how I identify.”

Devora has albinism, a rare genetic expression that leads to little or no melanin production. No matter what race or ethnicity someone with albinism is, their skin and hair appear white because of a lack of pigment. It is estimated that one out of every 18,000 to 20,000 people born in America each year has some form of albinism, according to the National Organization for Albinism and Hypopigmentation.

Devora grew up in Oakland, Calif., where, every so often, strangers would ask her mother about her “white” child. It made Devora question where she belonged.

“If we were out doing something as simple as buying shoes, it would be, ‘Whose child is that?’ ‘Are you baby-sitting that child?’ ” Devora recalls. “My older brother would joke, ‘Someone left you on the doorstep and rang the doorbell and left.’ ”

Natalie Devora sits with her daughter, Jewel Devora. Courtesy of Natalie Devora

As an adult, Devora felt ostracized when she attended a meeting for female writers of color at a bookstore in Oakland. One of the other writers wrote and read aloud a piece about how the meeting was a “black only space.” Devora felt it was directed at her and almost left. Instead, she wrote a piece of her own in response. “It touched on how my life had been a war of colors,” Devora says, and on how she struggles with being “both a black woman and a black woman without pigment.”

That deep, internal struggle felt by many with albinism often goes unnoticed by others. Because they often don’t look like the people within their racial group, the question is: Where do they fit?

“Unfortunately, society has some problems with difference,” says Mike McGowan, the president of the National Organization for Albinism and Hypopigmentation, or NOAH. “It can manifest itself to a child in terms of teasing and being shunned. It can manifest itself within the family, where family members or parents may feel that they have been cursed or have difficulty dealing with a child who is different or looks different.”

It helps when people with albinism have a chance to get together and talk, says McGowan. That’s what NOAH does. It was founded in 1982 in Philadelphia, and its roughly 1,000 members meet at local chapters in places as diverse as the San Francisco Bay Area, northern Illinois and south Texas. NOAH holds annual conferences, picnics and fundraising bowl-a-thons nationwide for adults and children with albinism.

“There’s almost a familiar connection that happens even though we’re not related by blood,” McGowan says. “The condition gives us a common experience worth sharing.”

There is little written about dealing with albinism or its psychological effects. In popular culture, albinism is often depicted negatively in a slew of books, movies and television shows, from the assassins in The DaVinci Code and The Matrix Reloaded to the evil “Albino” character in The Princess Bride hellbent on torture. The word “albino” is also deemed as derogatory by many in the albinism community, though it is often used in popular culture. Many members of the community prefer to be referred to as people with albinism.

Natalie and Jewel Devora Courtesy of Natalie Devora

So what’s behind the villainous references and negative treatment of people with albinism? A lack of understanding of the disorder, says Dr. Murray Brilliant, director of the center for human genetics at the Marshfield Clinic in Wisconsin. At the center, Brilliant conducts research on genes that influence human health disorders.

“Human beings define race as an important factor in identity,” Brilliant says. “It’s very important for people to have a group identity and albinism can complicate things.”

People with albinism have at times been revered around the world, but sometimes with some disastrous consequences. In 2012, NPR reported on East Africans with albinism in Tanzania being hunted for their body parts because they were considered auspicious. An organization called Under the Same Sun strives to protect Tanzanians with albinism. According to the 2011 Aljazeera documentary Spell of the Albino, these killings have gone down in part thanks to the media attention.

That brings us back to the original question. In a society where race is intrinsic to the fabric of our society — leaving aside the myths of post-racialism and colorblind politics — where do people of color, but without color, fit? Do they need to fit? And how should everyone else change their own perceptions about albinism?

Natalie Devora’s daughter, Jewel, is also African-American, and has a dark skin tone. Jewel, 20, who is adopted, says she was upset when she learned about how her mom has struggled with her identity over the years. “Color does matter, unfortunately,” says Jewel. “People with albinism are in the middle of it because everyone around them is asking them what color they are and where they fit in.”

At the same time, Devora points out, African-American people with albinism have some privileges that others, like her daughter, do not. Having white skin can affect how they’re treated anywhere from job interviews to police encounters to their own homes. “Even though someone may know that I am black as they are, there is still an assumption that I’m white,” she says. “Or that my blackness is not the same as theirs based on my skin color. Which means I would have access to greater privilege. Which honestly, in some cases, is true.”

Natalie Devora with her daughter, Jewel Devora, as a baby. Courtesy of Natalie Devora

The Devoras point to the experience of shopping for clothes together. Natalie says she often notices salespeople keeping an eye on Jewel, but not on herself or other white-skinned people in the store. “My responsibility as her parent and just as a person in the world is to call attention to that, like, ‘So, why are you following my daughter around?’ ”

Brandi Green, 33, is another African-American woman with albinism. She lives in Chicago and is an associate with Teach for America. She didn’t find NOAH until she was a young adult and says it would have helped to know about it as a kid since neither she nor her parents, who were also African-American, understood her condition.

“People at school would just be like, ‘You’re an albino.’ And I’d be like ‘I’m fair,’ because I didn’t know at the time,” Green says. “My parents hadn’t told me, so I didn’t take it as truth.” She recalls her parents’ explanations for her color: ‘Oh, we had white people in our family a long time ago,’ or, ‘You just take after some lighter people in our family.’ ”

As a result, Green says she would overcompensate to try and prove she was African-American, which didn’t feel right, either.

Her mother also struggled with questions from strangers about her daughter’s looks. “I think she didn’t really want to acknowledge any kind of difference,” Green says. “She’d tell me, ‘You’re just like everybody else.'” But over time, she felt more and more that albinism was a huge part of her identity.

Green was a student at Grinnell College in Iowa when she first learned about NOAH. An older African-American woman on the staff of her college — who also had albinism — invited Green to a local event hosted by the organization. For the first time, Green was able to talk about how she had been treated in the past. She remembers trading stories with people she met that day. “‘Oh wait, you were teased, too? Oh wait, I was teased!'” Green recalls, laughing. “‘They called you Casper?’ You know, just kind of talking about that.”

After seeing NOAH’s positive impact on Green, her dad supported his daughter’s involvement with the organization. That support has also helped Green embrace her identity, long after her parents died. “I grew up feeling really alone based on my difference and experiences,” Green says. Now, she says, she’s comfortable in her own skin, and helping others with this condition. “I’m very open about discussing it, very open about educating others.”

Anjuli Sastry is a former intern with NPR’s national desk. She’s an alumna of the Columbia Journalism school and the University of California, Berkeley. She’s a San Francisco Bay Area native and has previously worked with ABC News and the digital journalism startup, Beacon Reader. Find her on Twitter at anjuliks.

Courtesy of http://www.npr.org/sections/codeswitch/2015/12/07/457147952/people-of-color-with-albinism-ask-where-do-i-belong

2010 National Book Award Finalist, Nonfiction

Nothing to Envy: Ordinary Lives in North Korea

Spiegel & Grau, an imprint of The Random House Publishing Group

Interview by Meehan Crist


Meehan Crist: When did you first start working on Nothing to Envy, and why? Did you know when you started that it would be such an expansive, long-term project?

Barbara Demick: I was hired by the Los Angeles Times in 2001 and assigned to cover Korea out of Seoul. I had a vague idea from the very beginning that I wanted to write something about everyday life in North Korea. I was focused on the question of what it was like to be North Korean. What were they thinking behind the blank stares of the video footage we saw of mass gymnastics or goose-stepping soldiers? Were these people anything like us? This interested me much more than how many fuel rods they’d reprocessed from their nuclear reactor and over time my interest grew. It was shortly before George W. Bush’s famous “axis of evil” speech and it was virtually impossible for somebody like me, a U.S. citizen and journalist, to get a visa. Nothing like being told ‘you can’t’ to make a journalist really want to go. That’s how it was with me. I became obsessed. I felt if I couldn’t get inside their country, I’d get inside their heads. I interviewed as many North Korean defectors in South Korea as I possibly could. In 2004, I decided to focus on one city, figuring it would be much easier to corroborate what people told me. I picked Chongjin, a cold, closed and remote city where many people died of starvation in the 1990s. I collected maps and photographs dating back the early 20th century. Although few outsiders had been permitted to visit Chongjin, there were plenty of defectors. We published a two-part series in 2005 for the Los Angeles Times, which was the germ of the book that became Nothing to Envy.


MC: How did you choose your six subjects, the North Koreans whose lives the book follows for 15 years?

BD: I interviewed more than 30 people for the Los Angeles Times project and then narrowed it down for the book. It was a combination of factors—the most compelling stories, the best memories for detail, the most consistent accounts. I didn’t want exaggerators or embellishers. I wanted stories I could confirm. I liked using people who had at least one friend or relative out of North Korea, so I’d have a second source on everything. That way, I was able to reconstruct the dialogues with a reasonable degree of certainty. Frankly, I ended up picking people I liked and who liked me. The North Koreans in this book had to put up with me and the fact-checkers over a very long period of time.


MC: How did the changing political climate in North Korea over the years affect your ability to report on and write about the lives of the people featured in Nothing to Envy?

BD: It was fortunate that I moved to China in 2007. The towns along the Chinese-North Korean border are the best place to find out what’s going on in North Korea. I made several trips to the border late in the writing process and met with people from Chongjin, among others. It helped to keep my book up-to-date. In the course of my writing the book, the overall quality of life in North Korea improved, then in the last year it got worse again. A year ago, Kim Jong Il decided to shore up his power with a currency revaluation that was designed to close the private markets and confiscate the savings of the middle class. As a result, the standard of living in North Korea is almost as bad as it was in the 1990s, the period I described in the book.


MC: What questions drove you as worked on this book? In other words, what was it that you hoped to better understand by writing it?

BD: What happens to people living in the most totalitarian of regimes? Do they lose their essential humanity?
MC: Your previous book, Logavina Street: Life and Death in a Sarajevo Neighborhood, focuses on one street in wartorn Sarajevo. How did your work on that book inform the way you approached Nothing to Envy?

BD: The books are similar in that I told a complicated history through the eyes of ordinary people. Both books were based on a microcosm—a street in Sarajevo, a city in North Korea. With Logavina Street, I was also was trying to answer a nagging question: how could a tolerant, secular, heterogeneous community dissolve into ethnic and religious warfare?
MC: In addition to writing nonfiction books, you are the Beijing bureau chief for the Los Angeles Times. Do you think your work as a journalist has influenced the way you write your books, Nothing to Envy, in particular?

BD: Absolutely. I’ve spent my entire career as a foreign correspondent writing for daily newspapers, the Philadelphia Inquirer before the Los Angeles Times. We newspaper reporters disparage ourselves as hacks—“Oh I’m not a real writer,’’ I’ve said all along. But there is something to be said for a craft (yes, I’ll call it a craft) that requires the writer to be clear, direct, accessible. This is a discipline. A newspaper article has to be written with the assumption that the reader has no prior knowledge of the subject and all essential information is contained within. As I wrote Nothing to Envy, I imagined a reader who was intelligent and curious, but perhaps unable to locate North Korea on a world map or to tell the difference between Kim Il Sung and Kim Jong Il.

The other thing I would say in defense of newspaper writing: we have strict rules about not making stuff up. When I started at the Philadelphia Inquirer, we went through a two-day indoctrination session where we were told in essence that we’d be damned to some special hell for journalists if we embellished our quotes or created composite characters.
MC: What was the most unexpected thing you learned in the course of writing Nothing to Envy? How did this discovery help shape the book?

BD: The book didn’t start out as a love story. I was outlining a book about people’s lives in Chongjin that included a section about a young kindergarten teacher who had watched her pupils starve to death. In the course of interviewing this woman, Mi-ran in the book, she told me about how she’d defected without saying goodbye to the man she loved back in North Korea. She wondered if he would forgive her for betraying their love and their country, if she ever saw him again. A few weeks after we had this conversation, she telephoned my office, breathless. Her North Korean boyfriend was in Seoul. He’d defected too. She introduced us. His story, which so perfectly complemented her story, changed the book so that the romance became the bookends at the beginning and end. The romance was not just a powerful story; it allowed me to do what I’d set out to accomplish, to show the good along with the bad about North Korea.
MC: How did you decide on the structure for this book, and how do you feel this particular form serves the book’s content in a way other structures could not?

BD: I go with chronological order. It’s always worked for me. The challenge was flitting back and forth between the people, without making the switches feel contrived. Something I also did differently than in other journalists’ books: I kept myself largely out of the story. I wanted the reader to be completely immersed in North Korea in the 1990s and since I wasn’t there, I stayed out.


MC: Did you look to other books as models for Nothing to Envy?

BD: Yes. John Hersey’s Hiroshima. This is not exactly coincidence. I studied non-fiction writing with Hersey as an undergraduate at Yale, and he always taught us to look for models for our work. I reread Hiroshima several times while working on Nothing to Envy, looking at how he transitioned between people while carrying the story forward, his attention to detail, his respect for his subjects. I was a very disorganized student in college, subject to crippling bouts of writer’s block. I never finished my last paper for Hersey’s course and was graded down for having an incomplete. Hersey told me at the end of the semester to send him something later. If he were still alive, I’d send him the book.
MC: What was the most difficult decision you had to make while writing Nothing to Envy, and why was it so hard?

BD: The hardest thing was to balance my desire to write a book that was rigorously non-fiction with the need to protect families still in North Korea. This book would have been much easier if it were fiction, as I could have used composite characters about whom I perhaps could have divulged more.


MC: What part of Nothing to Envy was the most thrilling to write, and why?

BD: The epiphanies. Each of the six people in the book is going through more or less the same journey. They all start out reciting the same propaganda, singing in this case “We have nothing to envy in the world.” At some point, they figure out that they’ve been lied to all along, indeed, that their whole lives have been lies. I loved writing these scenes. My favorite was the doctor. Starving, she crossed the river into China and stumbled still dripping wet into the courtyard of a farmhouse. She was confused to see on the ground a bowl a bowl of rice with some scraps of meat—she realized at that moment, just an hour out of North Korea, that dogs in China ate better than doctors in North Korea.
MC: If you could choose one person to read your book, who would it be, and why would you want that person to read it?

BD: Kim Jong Eun, the twenty-something son of Kim Jong Il who was just tapped to be North Korea’s next dictator.


Meehan Crist is reviews editor at The Believer. She holds an MFA from Columbia University, and her work has recently appeared in publications such as The Believer, Lapham’s Quarterly, and the Los Angeles Times. Her nonfiction book, Everything After, is forthcoming from Houghton Mifflin Harcourt.

Courtesy of http://www.nationalbook.org/nba2010_nf_demick_interv.html

 

‘Dear Leader: Poet, Spy, Escapee’ – A Look Inside North Korea’ with author Jang Jin-sung

February 2, 2015 – Author Jang Jin-sung, on his first visit to the U.S., discusses his new book, Dear Leader Poet, Spy, Escapee—A Look Inside North Korea, which describes his life in North Korea as a psychological warfare officer and one of Kim Jong-il’s revered “court poets,” as well as his dramatic escape to China and South Korea. Jang will also read selections from his poetry and share insights into North Korea shaped by his experiences as well as contacts with North Korean exiles and overseas officials. The evening’s discussion will be led by Dr. Su Mi Terry, a former CIA analyst and current senior research scholar at Columbia University’s Weatherhead East Asian Institute.

10 Days in North Korea. Inside the most isolated country in the world

RT takes an exclusive look at North Korea, the world’s most closed-off country. Life here is isolated from the outside world and every aspect of existence is regulated by order of the “Great Leader”, from the art you’re allowed to see, the books you can read, even to your hairstyle.

The Democratic People’s Republic of Korea is perhaps the least known country in the world today. Based on a political ideology known as ‘Juche’, the socialist government controls every source of information and the national leader, Kim Jong-un, preserves the peace and defends the state’s historical, spiritual and cultural heritage. It’s hard to overestimate the Commander-in-chief’s role in the country: his likeness adorns the streets and squares in every city and village. Through official portraits and statues, he is, literally, everywhere and kindergarten children are taught to sing his praises. Locals adore Kim Jong-un and consider him the Father of the Nation, he encourages everyone to be patriotic and surpass all other nations.
Almost 15% of North Korea’s GDP is reserved for military spending, and long after the Korean War of the 1950s, the country has still not signed a peace treaty with its capitalist southern neighbor. As a result, thousands of families were torn apart by the political divide. The army remains a source of inspiration; it determinates the social structure and stimulates ordinary people to devote their lives to work in the faithful service of the Marshal. The people believe that this military ideology consolidates national spirit and guarantees stability and order.
However, not even tough military methods and an ideological barrier around the country can solve the economic lag or the enormous social and economic gulf between South and North Korea. Self-reliance and self-sufficiency are in stark contrast to the economic reality. Despite developments in labour cooperation, a demilitarized zone, demarcated by a huge wall between the two states, is still amongst the most heavily armed areas in the world.
President of the Korean Friendship Association, Alejandro Cao de Benos explains that due to the generally accepted ideology of the Workers’ Party of Korea, the people will never understand nor accept a western mind-set. From childhood, they are taught to be loyal to their leader and to beware of western values.
For most viewers North Korea remains a mystery but this unique film offers a limited window of opportunity to view Korean lifestyle through the prism of North Korean peoples’ every day cares and joys. RT Doc meets ordinary workers and soldiers to hear first hand, how they lived before being isolated from the whole world.

Saturday Night Movie: Red Dawn (2012)

This 2012 remake of an invasion of America sees the heartland occupied by a heartless North Korean army. The film’s debut virtually crowned North Korea as the only politically correct enemy that could be the bad guy in every film without fear of offending any potential movie audience. Sadly, the film doesn’t have the originality and emotional impact of the first film. Still, it is fine mindless entertainment.