ONE Magazine

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Catholic Near East Welfare Association

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A Source of Light

Children with disabilities find help and hope in Armenia

For 15-year-old Artyom Hovhannisyan, every movement is a victory. Confined to a wheelchair in a city without ramps, the boy depends on his mother to carry him from place to place. Even at home, he has very limited space to maneuver; in fact, their dwelling barely warrants “home.”

Artyom’s mother, Svetlana, rears her five sons alone in a wooden cabin — a temporary structure erected following the devastating earthquake of December 1988. What was to be temporary, however, has become permanent, and stands badly in need of repair. The floor and ceiling have been rotting for years. Holes in the faded walls have been papered over with the boys’ drawings, diplomas and various certificates.

When she smiles, the lines on her face reveal years of concerns — years spent tending a small plot of land to try and feed her children while living on a monthly pension of about $90.

Around her cabin, about six miles from Gyumri, the second-largest city in Armenia after its capital of Yerevan, temporary settlements dot the landscape — a collection of small iron and wooden buildings erected nearly 30 years ago to shelter the suddenly homeless. Over the years, their inhabitants have left the settlement, moving to new buildings in the city. Now, only Ms. Hovhannisyan and her five sons remain. The eldest, 18 years old, will soon leave to join the army, adding another source of concern as Armenia’s army remains on guard.

But for now, Ms. Hovhannisyan finds solace and a sense of order by tending the earth. She has cleaned the stones from the garden and neatly organized them near a fence. She has planted trees, tilled the soil and sowed flowers.

“I am not afraid of work,” she says. “I will do everything. But when my eldest son will be called to the army, I don’t know what I’m going to do, because he is my only help with Artyom.”

Every time she mentions his name, she fights back tears.

Caring for her son takes a toll, as Ms. Hovhannisyan has developed many problems with her spine and her veins. But a hope shines in her eyes when she watches, smiling, as Artyom plays with younger children. They laugh, and Artyom manages to catch a ball thrown by a 3-year-old and toss it back. To his mother, it is another small victory.

Artyom has cerebral palsy. He has been confined to bed for a year. His world is measured by what he can see from his small window in his room: The neatly tended yard, his mother working the garden, the game being played by his younger brothers.

“I understand everyone,” Artyom says. “I know it is difficult for them. My mom and brothers suffer a lot.” But Artyom’s eyes radiate kindness and patience, not anger or frustration. He is not even angry with the father who left them because, as with so many of his generation, he believed it unacceptable to have a “sick” child.

Artyom does not want to talk about that part of his life. He prefers to talk about a nearby center that has become a source of friendship — friends he would never have dreamed about just a few years ago.

The Emili Aregak Center, established near Gyumri by Caritas Armenia, the charitable arm of the Armenian Catholic Church, has been Artyom’s beacon of joy.

Inside the glass-covered building, everybody is busy — they sing in one of the rooms, play in another, do exercises in a third, hold discussions in the fourth. Alive and vibrant, this unique space offers children and young adults with special needs and physical challenges room to move and room to live with sun and space in abundance.

“Everything is interesting here,” Artyom says happily. “I have participated in pottery classes. I have many good friends who help me.”

The center has changed Artyom’s life. The view beyond his window is now wider, brighter and full of hope.

“It is so good here. Everyone is joyful, everyone is nice and I love them a lot.”

Fittingly, the center’s very name is rich with meaning. “Emili” refers to Emili Nakhbarau, a major benefactor who spent much of her life confined to a wheelchair because of a car accident. And the word “aregak” means “sun” in Armenian. When people speak of the center, they cannot help but speak of the center as a place of possibility and healing — and a source of light.

Many in Armenia face brutal circumstances. Some 29 percent of its population lives in poverty. Most of those with disabilities are unemployed — 92 percent, according to a 2013 joint study of international agencies. Government programs can help, but they are accessible to only a few; among other issues, transportation is limited and buildings remain largely inaccessible to the disabled.

The country’s educational system has limits, too. While education is nominally open to all, schools are not equipped to handle special needs; they lack specialists, ramps or books in Braille. Thus, most children with special needs stay behind with their caregivers. Specialized facilities, such as the Emili Aregak Center, are few.

Public attitudes toward disabled people have scarcely changed since the Soviet era, with many Armenians believing that disabilities of all kinds are a source of shame. Social discrimination and marginalization are widespread.

Even among survivors of the 1988 earthquake in the Shirak region of northwestern Armenia, disabilities are considered a punishment and a curse. As a result, many keep their children hidden at home.

Ovsanna Torosyan, whose 20-year-old son Edward has cerebral palsy, tells much the same story.

“Until now, I rarely took him out in his wheelchair,” she explains. “You would not see people in wheelchairs on the streets — all were hidden.

“I used to take Edward to swimming therapy, which is very important. But then I heard that parents were complaining that my son with disabilities should not be swimming with their other children.”

Such attitudes — and words expressing their hatred, their sorrow, their dissatisfaction — become a source of constant stress for the child as well as the parent, she adds.

“No matter how much time passes, you can’t overcome this pain.”

Ms. Torosyan has been bringing Edward to the center for years, even before the construction of the current facility.

“We were a bit skeptical, but decided to come to the center,” she says. “Back then, Edward was 7 years old. He couldn’t say a word. But soon after attending the center, he started to talk. Now he speaks so well. In the beginning, he was not independent. He couldn’t feed himself. The volunteers at the center would do everything.

“But thanks to their devoted efforts, my Edward learned to eat on his own. This is a great achievement.”

Ms. Torosyan wipes tears from her eyes.

“I cry every day,” she says. “My only comfort is this center. Every day I bless those who have established this center. The staff is so caring, kind and professional.”

She adds that the center’s work goes beyond therapeutic and technical activities. “They also ensure our leisure time,” she says. “Numerous activities, excursions, walking tours give great inspiration to us. We are so grateful that they give this happiness to so many kids, so many parents.”

Tamara Vanoyan, who coordinates activities at the center, recalls that when it first opened — at first occupying a small two-story house — they would work with just ten people a day. Now the center’s staff serves between 30 and 35 children and young adults every day, with nearly 100 people enrolled in total.

In 2015, it moved to a larger building to offer more services in an open and sunny space. Here, students take part in a variety of activities and are able to receive professional help, bathe and eat a nourishing meal.

“The new building enabled us to provide large-scale services,” Ms. Vanoyan says, such as physical, musical and speech therapy, as well as psychological care.

“In the beginning, with limited facilities, we didn’t have the means for early intervention,” she says, referring to programs and services geared toward infants and toddlers with disabilities. “But now we can do more.

“The goal of early intervention is to ensure the children attend kindergarten, get to school on time, makes friends and are present in society. It’s an opportunity to help them be as independent as possible.

“Now that we can do this, the center has become something essential, like air and water,” Ms. Vanoyan says.

Social workers engage with families to identify and address problems, as well.

In cold months, they pay gas fees for families struggling to make ends meet. They also provide food or transportation for some families, and work with parents or guardians to offer counseling and other necessary support.

Clergy of Armenia’s Apostolic and Catholic churches give regular talks, too, which helps to connect the children to the church — a major force in a nation that first adopted Christianity in the year 301.

Special attention is paid to the protection of children’s rights, and to ensure they receive proper schooling.

“We don’t teach children here, as we believe they should get their education at general schools,” says Tigranuhi Hakobyan, who directs the center for Caritas Armenia.

“Our main task is to integrate children into society.”

This can prove to be a challenge, with many of the children and young adults living with parents or caregivers who are still burdened with a sense of shame over the stigma of disability.

For 20-year-old Suren Avdalyan, the center has been transformative. Suren, a student at Faculty of Law at Shirak State University, has been involved with the center since its establishment. Suren suffers from cervical palsy — a spinal condition that affects the mobility of his limbs. Thanks to physical therapy, he can now walk.

He credits the center and its staff with giving him more than just mobility. It has also given him confidence.

“You get insecurities along with your disability,” he explains.

“Even a minor difference in this town catches the eye. People show their attitude with their facial expressions and words.

“I wasn’t afraid of it; I was only frustrated,” he adds.

“The first important step is to overcome the insecurities. Previously, I would be shy and not go out. Now I walk in town with a walking stick,” he says with pride.

Suren has become a volunteer at the center, and has established

Easy Life, a nongovernmental organization that tries to improve living conditions by customizing the apartments for people with disabilities.

“There is a challenge,” he says. “Here at the center, accessible facilities help children to become independent — able, for example, to use the bathroom on their own. But then they leave and they face the inconveniences of their own homes.”

That is why Suren has decided to help the families of these children at the center — among them, Edward Torosyan and his family. The NGO has built an accessible bathroom in their cabin, and added ramps.

Easy Life has done an enormous amount in a short period of time. However, the young man regrets that NGOs are born of necessity, usually because of shortfalls on the part of the state. He hopes that one day the government will do its part.

Armenian children with special needs — especially those reared in poverty — feel they are a burden: Their needs prevent their parents from working. Some are even rejected outright; often, their fathers just walk away.

“My husband could not accept having a disabled child,” says Anahit Avdalyan, Suren’s mother. “He would always ask why it should have been like this. However, children should be accepted as God’s gift and not as a problem,” she says.

“The husband’s role is vital. Unfortunately, in my family it didn’t work out. I was left alone, but together with my three girls, I managed to overcome our circumstances,” she says.

“Humans can endure everything in life, if the family stands together.”

Ms. Avdalyan is fully engaged her son’s life, and even works as a cook at the center.

“It is difficult to choose the main menu,” she says. “Children have different dietary needs. There are children with chewing disabilities, children with autism who don’t like everything. We take into account the children’s wish.”

Ovsanna Torosyan jokes that her son enjoys the meals in the center more than the ones cooked at home.

“This center is a bright light for us,” Ms. Torosyan says.

“Now, we have become a big family, we are close to each other. We have the same problems, which makes interaction easier. The warmth of Aregak has brought all of us together,” she says, grinning.

However, the children’s futures remain unclear. Armenia has begun efforts to connect those with special needs to the labor market, but there remains much work to do.

“Growing up, children have no place to go,” explains Tamara Vanoyan, “but we have done so much and can’t let them forget that. We try as much as possible to give them skills so that they can use those in the future.”

There is need for similar centers in other towns of the region. According to official data, in Shirak alone there are more than 19,544 registered persons with some sort of disability, including 753 children. Many either cannot go to school, or are educated at home. This is one reason why the center in Gyumri is such a bright light — even sharing its message of hope through outreach.

“We celebrate all holidays together,” Edward Torosyan says. “We hold auctions before holidays, make and sell handmade items and help poor families,” he says.

“We have nice days together. One of the kids here even went to Germany. They invited us, but I said I wouldn’t leave my church or Gyumri. I love my country, my home, my ‘Aregak.’ “

Gayane Abrahamyan’s reporting has appeared in The Atlantic, EurasiaNet and ArmeniaNow.

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