Thursday, June 13, 2013

Blind to the Blind: The Struggle for Opportunity in Mongolia

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A visually impaired worker assembles a ger outside of the factory for the blind in UB
By Dashiell Young-Saver
It’s hard to faze Gladis. It’s even harder to faze Uyanga.
In the hotel’s 6th floor lobby, the sounds of flashes, video equipment, scurrying leather shoes, and quick questions scattered across the walls. Heat from bodies rose to meet the smells of lunch coming from the next room, which created pockets of disruption in the comfortable, sanitary hotel smell. Everyone was hungry. But they had to wait; wait in the noise; wait for the last microphone to mute. Uyanga sat on a lobby chair. Her dog, Gladis, was on the floor. After the UNICEF event for children with disabilities was over, they were some of the last to move and sit for the meal.
“The cameras: they like the dog,” she said in a cafe a week after the event. Most of her sentences carried a similar bluntness, her face, an accompanying skepticism. Yet, her voice was light. She does not like the cameras.
After fighting hunger, general isolation, and discrimination in childhood, Uyanga graduated from the University of the Humanities in 2006. She then studied in America for two years, on the Fulbright Scholar Program from the US Embassy, earning a Masters in Library and Information Science from Louisiana State University. She became the first blind Mongolian citizen to earn an American degree. Since then, she’s come back with the first, and only, guide dog in Mongolia, and she has been featured on several national news outlets.

“It’s been four years now since I left America, and I’m still going through the transition,” said Uyanga. She frowned.The extra attention does not help. “I feel disabled again. In the States – there you find ways to make it happen. You come back here and every step of the way – everything – you can’t do it.”
When she returned, Uyanga had trouble finding a job because no business would let her dog in. Now, she works for the US Embassy as an Alumni outreach coordinator for the public affairs office, helping others, disabled or otherwise, travel to foreign countries to study on scholarships.

Only 2.8 percent of the adult blind or partially sighted in Mongolia were employed in 2011. As a result, she has become a role model not only for the blind, but also for the whole Mongolian disabled community. It is both a role and restriction she never asked for.
“Some people in the past, disabled or otherwise, would tell me that I was being selfish, that I had to be more active, do things or demonstrate or be more involved,” she recalled. “The major I chose was library – I didn’t choose public policy.”
Her dream was to make information accessible to the blind and others – the same information she did not have access to as a student. She poked at the remains of a salad at one of the few cafes at which she could eat. “But, regardless of what I feel, I am identified as a leader and a role model in the community. I just want to be like other people. I just want to be and do the things I want to do. I don’t want to be a role model. I don’t want to be like a hero or anything. I just want not to be limited.”
But, after 29 years of battling and overcoming limitations, she has come to face another reality.

“That’s no longer possible.”
Accepting the circumstances
There is one school for the blind and partially sighted in Mongolia – Public School No.116, located in Ulaanbaatar. A total of 84 students attend, with 63 of them living in the dorms on the top floors. Students come from all over the countryside to attend the school, often leaving families at home. Many can go back on the weekends. Others cannot.
Uyanga first attended the school when it was called School No.29, back in 1992. She started losing her sight at age four to a disease called Retinitis Pigmentosa. By age nine, she could not go to school in her hometown of Darkhan. So she left her family for Ulaanbaatar over 200 kilometers away. Her father, after a short while, quit his job to move in with Uyanga’s grandparents in UB, in order to be closer to his daughter.
When she attended the school, the country was struggling for funds amidst its transition to a capitalist economy, so there was not much left over for the blind students. Many of the teachers could not read Braille, but most of the books were not written in the language anyway. Often, they would run out of the special Braille paper and had to use toothpaste containers as a replacement since they retained imprints. And as for food, it was enough to “keep (them) alive.”
Since then, conditions at the school have improved. It can now print its own texts in Braille, and it has books in Braille for subjects ranging from English to Biology. The teachers are more properly trained, and four of them are blind or partially sighted. The current building has facilities for music recording, basketball, table tennis with balls that make sound, technological study with auditory software, and ceramics. And they are well fed.
“Now, with all the changes, more students are able to go to universities. The school has changed a lot,” said Enhtuya, the director of the school. She has spent 24 years working at School No. 116, the last eight as its director. She spoke with the soft calm of an experienced mother. “We can still develop education, and I dream of a day when our special students are perceived as just students.”
Last year, twenty six Mongolian blind and partially sighted students were attending universities. However, according to the National Federation of the Blind (NFB), some had to drop out because of the schools’ lack of Braille resources. Most who graduate from the school now move on to attend universities. When Uyanga graduated, virtually all the students went to the factory for the blind in UB to work, not being able to escape the isolated environment secured for the blind.
“It was not only the society who feared the disabled, but it was the disabled children who started to fear the society,” she said, when recounting isolation in the dormitories. “It was like a circle in a blind person’s life – go to school for eight years and go to a special factory for a blind, it also has an apartment complex for adults. And get married to another blind person and live there for the rest of your life.”
Uyanga had to petition the school system to make an accessible version of the nationwide college exam once she graduated. Most universities were not keen to accept her, often wondering why she would bother getting a post-secondary education if she would probably end up working at the factory anyway. But through the help of her classmates and family, who would stay up with her until three or four in the morning every night to read to her the texts from her course, she was able to earn her degree with distinction.
“Until age 27, I had never read a book myself. That’s how limiting everything was,” she said. It is one of the main reasons whyshe got her Masters in Library and Information Science. “You don’t have information and contact with the outside world and society with the exception of the family.”

And although conditions now are better for the schoolchildren, many still live without access to employment and education. A 2010 census found that there were 16,000 blind people in the countryand 7,200 of whom are working age.And the government’s Center for Children reported that about 5,000 visually impaired children live in Mongolia.With only 84 currently attending the one primary school for the blind, a great majority still live isolated in their family environments, without knowledge of or funds for a standard education. The unemployed blind, or about 97 percent of those at working age, are given welfare checks by the government, which include 100 USD spending money a month, 100 per year for heating, 12 every month for telephone use, and 900 every three years to buy special equipment, such as canes. In Mongolia, it’s enough to survive. According to its recipients, it’s not enough to live.
Fighting the circumstances
The day before Children’s Day, UNICEF launched its State of the World’s Children Report in Ulaanbaatar, which detailed recommendations for global governments on the inclusion of children with disabilities in society. Representatives from the Parliament spoke at the event on the challenges and successes of forming policies about children with disabilities in Mongolia.
“Mongolia is a young country, in terms of age. And our future is the children, so we must make sure they are all good citizens,” said S.Erdene, MP and the Minister of Population Development and Social Welfare, at the event. “This is why we must help impaired children and their families.”
The government has passed an impressive amount of legislation (by international standards) to assist people with disabilities in the past few years. The Mongolian government has ratified the Convention on the Rights of Persons with Disabilities (CRPD), approved subsidies for families with children with disabilities, and introduced peer-to-peer advising programs. According to MinisterS.Erdene, it also plans in the future to develop its data collection of children with disabilities and institute a program that will create centers for students with disabilities in all of Mongolia’s provinces.
“I see that Mongolia has put a lot of effort towards public investment on children, such as with social protections and school feeding programs,” said Mohamed Fall, a representative from UNICEF, “but still there are gaps.”
Most workplaces still remain inaccessible to the blind, even though the CRPD calls for “elimination of obstacles and barriers to accessibility” in “workplaces.”And general accessibility varies greatly in each region of the country. Activists stress that these gaps in implementation pervade every part of society.
However, the Ministry of Labor is beginning research on a 31-million USD project in 2014 to improve labor access for persons with disabilities. Twenty five million of the project’s funding will be on loan from the Asian Development Bank.
The largest and most active Mongolian non-governmental organization providing assistance for the blind is the NFB. It runs a massage center; a factory that produces gers, paper bags, swing-set materials, and brooms; as well as a radio station, which all employ blind and partially sighted adults. The federation offices also employ the blind, who help print books in Braille for schools and have sponsored the production of Braille ballots for the upcoming election (the first time such a practice will be done).
“Most of society thinks of the visually impaired and blind as care receivers or patients, so we are trying to provide the understanding that we are people, it’s just that we cannot see,” said D.Gerel, President of the NFB. She started to lose her sight at age 22, when she was already attending college. She went on to earn a law degree and continues to turn down more lucrative offers from other law jobs. “We need to make this place a better place for people with disabilities.”
The NGO now has branches in all 21 provinces and two remote districts, many of which have rehabilitation centers with English, Braille, technology, and masseuse training. Bat-Erdene, a fully blind young man, moved from his countryside home in Uvs to the dormitories at the Ulaanbaatar branch in order to receive the primary and secondary school education he missed as a child.
“I used to just stay at home, and now my life is changing,” he said, sitting in front of a computer at which he was being trained. “Now, I know the alphabet and computer and have lots of friends.” He made a few jokes about being a child as an adolescent before returning to the screen.
Seeing the goal through
“When it became apparent that I would lose my sight, they didn’t treat me specially and didn’t make exceptions for me,” said Uyanga in the cafe, speaking of her family. She credits part of her success to her role in the family.
Many activists for the blind in Mongolia echo the need for the average citizen to see those with disabilities as contributors rather than recipients of charity.Now, the challenge for many is to use Mongolia’s new tangible resources from mining operations to achieve the more intangible goal of inclusion in its education and workforce.
It has not been easy. There have been several hunger strikes in the last decade about legislative decisions for the blind and disabled. Members of NGOs periodically need to reeducate lawmakers in Parliament once new parties come into power. And more discussion and disagreement is predicted to accompany the government project next year aimed at combating the high unemployment rate.
Yet, for the many like Uyanga, the changes remain slow while the debate hastens. The norm persists. By the end of her meal, her face looked tired. It was a weeknight. Her high cheek bones seemed to sag down a little bit.
“This world itself is not for disabled people…When you are small, you are still hopeful; you still have dreams and still think that you could become a surgeon or pilot when you are blind.”
Her younger sister drove her home. She had work the next day.
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