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The Sound of Hope

2016-06-08 22:53:07ByYuanYuan
Beijing Review 2016年19期

By+Yuan+Yuan

Zhao Xie plans to take her daughter back to Inner Mongolia Autonomous Region from Beijing during the summer vacation this year. The child, having stayed in Beijing for almost two years, is now 3 years and 7 months old—but despite having a hearing impairment, she is almost ready to return to a normal life.

Zhaos daughter, Wang Yunuo, was diagnosed with a hearing impairment in November 2014.

“I felt like my world collapsed when we heard the diagnosis, and my husband felt the same way,” Zhao told Beijing Review. “No one we knew had experienced something similar, and we couldnt imagine what it would mean for our daughter.”

Even so, the family acted quickly upon hearing the news—20 days after the diagnosis, they gave their daughter a cochlear implant.

“I knew at that time that there were some charitable projects that provided free artificial cochlear systems,” Zhao said. “But the application process takes some time and we were too desperate to wait.”

It cost the family 280,000 yuan ($43,110) for the operation, which they had to borrow from friends. But that was just the start of the whole rehabilitation process.

After excessive research, they finally decided to send their child to the Beijing-based China Rehabilitation Research Center for Deaf Children (CRRCDC) for further training.

The CRRCDC, which is affiliated to the China Disabled Persons Federation, was founded in 1983. It is so far the only national center engaged in hearing and speech rehabilitation in China, providing services for hearing-impaired children throughout the nation.

Ma Yanfang, who teaches auditory verbal therapy (AVT) at the center, has been working there for 12 years.

“When I started my work here in 2004, there were less than 100 children and the rehabilitation standards were not high. Cochlear implants were not as popular either,” Ma told Beijing Review. “Now there are more than 200 kids here.”

Parents are required to take classes together with their children for several months if they are under the age of 3.

There are six levels of classes depending on the patients ages. “For children with hearing-impairments, the earlier they get rehabilitation training, the better the results can be,” Ma said.

To help their disabled students future involvement in ordinary schools, the CRRCDC also enrolls youths with no hearing problems.

The rehabilitation center is renowned throughout China, attracting numerous patients from around the country.

“Eighty percent of the parents in my class are not from Beijing,” said Liu Minghe, a teacher in the center who has been working there for two years. “Most of the mothers have quit their jobs in order to stay in Beijing and care for their children.”

Zhao, who used to be a mathematics teacher in an elementary school in Inner Mongolia, asked for a long leave of absence to keep her child company. She rented an apartment near the treatment center and is visited by her husband during the holidays.

“My husband earns about 3,000 yuan ($460) a month, which is far from enough to cover our expenses in Beijing,” Zhang said. “We have to turn to our parents for financial help.”

For the first three months, Zhao took classes with her daughter every day, starting from 8:30 to 9:30 in the morning. After that, her daughter joined the centers ordinary classes, which start at 7:30. Zhao therefore gets up before 7 a.m. every day and picks up her daughter in the afternoon at 4:40.

Chen Haoliang, whose daughter Hao Feifei, is in the same class with Wang, is luckier, as her husband works in Beijing and can stay with them.

Hao was diagnosed with a hearing impairment 17 months after birth and was sent to the center in March 2014 after receiving an audiphone.

“We took our child to all the comprehensive hospitals in Beijing and finally accepted that she wouldnt be able to recover a normal lifestyle,”Chen told Beijing Review. Therefore, they ordered an audiphone for their daughter less than one month after the diagnosis.

Hao is now 3 years and 9 months old and can communicate fluently with people.

The world of sound

For parents, financial pressures often follow closely behind emotional stress.

Zhao is anxious about what her daughter may experience on returning back to Inner Mongolia. “In Beijing, she is surrounded with youths that have the same problem and there- fore feels little difference, but in our hometown, she might be regarded as an abnormal child,”Zhao said. “We worry it will have a negative effect on her.”

Chen doesnt plan to send her daughter back to her hometown in Hebei Province due to the same concern, since she believes that larger cities such as Beijing are less prejudiced.

But enrolling into an ordinary elementary school in Beijing will be a problem. “My daughter doesnt have a Beijing hukou, or household registration, which makes it difficult to enroll her into a school in Beijing. Besides, her hearing problem can only add more difficulties to this,” Chen said. “But we will try our best. Before that, my daughter will stay in the center until shes 6 years old in order to get the best result that she can receive from the rehabilitation process.”

Ordinary schools often foster concerns regarding the acceptance of children with hearing disabilities, according to Zhao, mostly because cochlear implants are expensive. This may have led to fears that some school activities such as P.E. lessons might cause unexpected damage to the instrument.

Parents such as Zhao also factor in other worries when considering what may happen to their children should they attend normal schools. “What would my daughter say to other students when they ask her why she has to wear something in her ear?” Zhao wondered. “Ill have to figure out an answer before it happens to her.”

Similar self-conscious concerns are reflected throughout a number of parents whose children suffer from hearing disorders. “When choosing the color of the implants, parents always choose black or gray, fearing that bright colors might be too obvious,” Wan Min, President of Beijing Hearing Society, told Beijing Review.

Wan was quite impressed while helping a hearing-impaired girl from Shenzhen decide on the color of the cochlear implant she wanted.

“We didnt let the father interrupt her choice, and the girl was very happy to choose bright orange,” Wan said. “In many cases, it is the parents, not the kids, who worry about how others will judge them.”

More aid needed

When asked by her daughter why she has to wear an audiphone while the other children dont, Chen replied, “It is the same as me wearing glasses while your father doesnt—I cant see clearly so I wear something to help, the same thing applies to your ears.”

“It is still different though,” Zhao said. “We can see people with glasses everywhere on the streets, while audiphones or cochlear implants are a rare sight.”

Before joining the center, Liu studied preprimary education. “Before I came here, I had no idea what teaching at the center would be like,” Liu said. “Now, my friends always ask me whether I use sign language in class.”

“The attention that society pays to this group is still not enough,” Wan said.

Long Mo, Deputy Director of the CRRCDC told Beijing Review that on average, there are about 20,000 children born with hearing impairments every year in China. With the relaxing of the family planning policy, the situation is likely to grow, according to Long.

“The government in the past decade has increased investment in the rehabilitation of hearing-impaired children,”Long said. “During the 11th Five-Year Plan (2006-10) period, the government provided 1,970 cochlear implants and 9,000 audiphones for free. Furthermore, during the 12th Five-Year Plan (2011-15) period, the government offered 16,865 cochlear implants and 18,000 audiphones.”

The CRRCDC is also planning to expand its operations, and has selected a new location to do so. “It will host more kids in the future,” Long said.

Kang Mengwen—who was the first Chinese person to receive a cochlear implant—offers hope to parents like Zhao and Chen. Kang entered a normal primary school and high school and later on went to the United States for further study.

“She is very confident and I hope my daughter can be like her,” Chen said. “No matter what she does in the future, I just want her to be happy.”

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