CABAR.asia
Kyrgyzstan:
Everything is at their own cost
Everything is at their own cost
Expensive treatment, lack of postoperative rehabilitation and shortage of educational centres. These are the things faced by parents of children with hearing loss in Kyrgyzstan. In turn, adults indicate the unavailability of higher education and problems with employment.
There were 4,500 persons with disabling hearing loss in 2021 in Kyrgyzstan. This is the data provided by the Ministry of Labour, Social Security and Migration. According to Nazgul Cholumova, head of department for development of social services to persons with disabilities and senior citizens, the state pays social securities to persons with hearing loss and speech disorders – children under 18 begin to receive payments of 8 thousand som (94.3 dollars) per month from 2022, and persons aged 18+ receive securities according to their disability status.
Difficult access to education and work
25-year-old Kyrgyzstani Evgeny Shabunin is hard of hearing from birth. He inherited it from his paternal grandparents. The young man can lip read – not only he has to follow the talker's speech, but also look at the emotions. Therefore, if a respondent has poor articulation, it becomes harder to understand them.
"It became very difficult during the pandemic," Evgeny said. "For example, doctors began to wear face masks at the hospital, so it's almost impossible to understand what they tell. When I ask them to take off their masks, they refuse."
When communicating with people, according to Shabunin, it is most difficult to speak to the older generation.
"They don't understand what "hard of hearing" or "deaf mute" mean. They think we are abnormal," he said. "But it's easier with the younger generation. Some of them even learn the sign language to communicate with us."
"It became very difficult during the pandemic," Evgeny said. "For example, doctors began to wear face masks at the hospital, so it's almost impossible to understand what they tell. When I ask them to take off their masks, they refuse."
When communicating with people, according to Shabunin, it is most difficult to speak to the older generation.
"They don't understand what "hard of hearing" or "deaf mute" mean. They think we are abnormal," he said. "But it's easier with the younger generation. Some of them even learn the sign language to communicate with us."
Shabunin completed 10 grades of the boarding school for hearing-impaired children, and then was enrolled to the college of computer systems and technologies. After college, the young man failed to obtain higher education.
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"Universities are not adapted to us," he said. "There are no sign language interpreters, no good conditions for learning, and teachers do not know how to work with us."
According to Evgeny, the state should improve teaching methods for hearing-impaired people and introduce qualitative inclusive education.
According to Irina Gordeyeva, chief specialist of the Basic Vocational Education Office, there are no special vocational colleges for hearing and speech impaired persons in Kyrgyzstan.
"Young people with disabling hearing loss may study at vocational colleges No. 18, 3 and 27," said Gordeyeva to CABAR.asia. Colleges have sign language interpreters, while students are provided with free food, dormitory accommodation and are paid scholarships.
As to the higher education of hearing and speech impaired persons, it would be difficult to implement everywhere. According to Ainura Asan kyzy, specialist of the Higher and Secondary Education Office, two persons must be present during classes – teacher and sign language interpreter.
According to Irina Gordeyeva, chief specialist of the Basic Vocational Education Office, there are no special vocational colleges for hearing and speech impaired persons in Kyrgyzstan.
"Young people with disabling hearing loss may study at vocational colleges No. 18, 3 and 27," said Gordeyeva to CABAR.asia. Colleges have sign language interpreters, while students are provided with free food, dormitory accommodation and are paid scholarships.
As to the higher education of hearing and speech impaired persons, it would be difficult to implement everywhere. According to Ainura Asan kyzy, specialist of the Higher and Secondary Education Office, two persons must be present during classes – teacher and sign language interpreter.
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"Or the lecturer must know sign language in addition to the discipline," Asan kyzy said. "If we introduce this practice, it would affect the cost of university education. The price will rise, and it will become unaffordable to many people."
Shabunin works now at one of Bishkek coffee houses. However, he had to search a lot before he could find a job there.
"Generally speaking, the situation with employment is very difficult here," he said. "I was a packer at the print house before the coffee house. But I've always wanted to try something else, and submitted my CVs to different places. However, almost everyone refused because of my hearing loss."
Later on, a friend told Evgeny that a coffee house was opening in Bishkek, where he could find a job. The man wrote his future employer without hesitation and later was invited to work as a barista.
"He [chief] believed in me!" Shabunin said. "And he showed the way to others that people with disabilities are just the same as others!"
Kulira Kubatova, expert in social issues, said that the state does not comply with legislative rules, which say that the country must make it possible for the people with disabilities to be employed and to be promoted.
"No employer would employ a staff of sign language interpreters for hearing-impaired employees," Kubatova said. "How can we speak about promotion if only 1 per cent of people with disabilities are employed with the civil service?"
Kubatova also said that previously a group of experts had carried out a research "The impact of medical and social factors on disability indicators in the Kyrgyz Republic from 2015 to 2020". The report showed a range of existing conflicts in the legislation regarding employment of people with disabilities. The research is going to be presented to the Board for Persons with Disabilities.
"Generally speaking, the situation with employment is very difficult here," he said. "I was a packer at the print house before the coffee house. But I've always wanted to try something else, and submitted my CVs to different places. However, almost everyone refused because of my hearing loss."
Later on, a friend told Evgeny that a coffee house was opening in Bishkek, where he could find a job. The man wrote his future employer without hesitation and later was invited to work as a barista.
"He [chief] believed in me!" Shabunin said. "And he showed the way to others that people with disabilities are just the same as others!"
Kulira Kubatova, expert in social issues, said that the state does not comply with legislative rules, which say that the country must make it possible for the people with disabilities to be employed and to be promoted.
"No employer would employ a staff of sign language interpreters for hearing-impaired employees," Kubatova said. "How can we speak about promotion if only 1 per cent of people with disabilities are employed with the civil service?"
Kubatova also said that previously a group of experts had carried out a research "The impact of medical and social factors on disability indicators in the Kyrgyz Republic from 2015 to 2020". The report showed a range of existing conflicts in the legislation regarding employment of people with disabilities. The research is going to be presented to the Board for Persons with Disabilities.
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"No employer would employ a staff of sign language interpreters for hearing-impaired employees," Kubatova said. "How can we speak about promotion if only 1 per cent of people with disabilities are employed with the civil service?"
Kubatova also said that previously a group of experts had carried out a research "The impact of medical and social factors on disability indicators in the Kyrgyz Republic from 2015 to 2020". The report showed a range of existing conflicts in the legislation regarding employment of people with disabilities. The research is going to be presented to the Board for Persons with Disabilities.
Few rehabilitation and educational centres
Gulsiyat is turning 7 in June. In autumn 2021, the girl was enrolled to a regular school. The parents learned that the girl could not hear when she was 8 months old. Grandmother, Sveta Alieva, was rocking the girl in a pram and cried out suddenly.
"Any child would have waken up from my cry, but she did not show any emotions," Alieva said. "Then I said to Gulsiyat's parents that I didn't like it and we moved to the hospital."
The parents, of course, did not believe that there could be something wrong with the baby, but the grandmother insisted and the baby was taken for examination. At the clinic, the doctor confirmed that the child was deaf.
Thanks to the agreement between Turkey and Kyrgyzstan in force at the time, Gulsiyat's family managed to get a free quota for cochlear implant surgery in Istanbul. However, only treatment was free, travel expenses and accommodation were at their own expense.
"Any child would have waken up from my cry, but she did not show any emotions," Alieva said. "Then I said to Gulsiyat's parents that I didn't like it and we moved to the hospital."
The parents, of course, did not believe that there could be something wrong with the baby, but the grandmother insisted and the baby was taken for examination. At the clinic, the doctor confirmed that the child was deaf.
Thanks to the agreement between Turkey and Kyrgyzstan in force at the time, Gulsiyat's family managed to get a free quota for cochlear implant surgery in Istanbul. However, only treatment was free, travel expenses and accommodation were at their own expense.
A cochlear implant is an electronic medical device that functionally replaces the injured inner ear. Unlike hearing aids, which increase the loudness of sounds, cochlear implants perform the function of the injured inner ear (cochlea) by transmitting sound signals to the brain.
"We had no money at all back then," Sveta said. "But as they say "many a little makes a mickle". The administration and colleagues of Gulsiyat's father and mother and ordinary people helped them financially. We had some cattle, gold, and we sold them all. This is how we managed to collect the money we needed."
Turkish doctors performed the surgery successfully and Gulsiyat was implanted the cochlear implant at the age of 1.3. However, according to Alieva, more difficult stage began after the operation.
"We thought the child would hear us and speak right after the surgery. But it was otherwise!" Sveta said. "The child should be taught from scratch to hear and understand what she should have understood from birth. And this is a very difficult process."
Almost a year after the operation, Gulsiyat did not speak. It only remains to guess how much effort was made by parents. At the same time, adults did not stop working with her for a second.
"We literally spoon-fed everything to her," Alieva said. "Whenever you cut something, you explain to her: this is a knife, it is blue or green; whenever you go on a bus, you show: this is a big building, this is a small building; this is a dry leaf, this is a wet leaf. It was like that all the time."
In addition to her homework, Gulsiyat attended private educational centres and various preparatory classes, where she worked with speech therapists and pathologists. Finally, hard work and constant training paid off – the girl was able to speak.
Turkish doctors performed the surgery successfully and Gulsiyat was implanted the cochlear implant at the age of 1.3. However, according to Alieva, more difficult stage began after the operation.
"We thought the child would hear us and speak right after the surgery. But it was otherwise!" Sveta said. "The child should be taught from scratch to hear and understand what she should have understood from birth. And this is a very difficult process."
Almost a year after the operation, Gulsiyat did not speak. It only remains to guess how much effort was made by parents. At the same time, adults did not stop working with her for a second.
"We literally spoon-fed everything to her," Alieva said. "Whenever you cut something, you explain to her: this is a knife, it is blue or green; whenever you go on a bus, you show: this is a big building, this is a small building; this is a dry leaf, this is a wet leaf. It was like that all the time."
In addition to her homework, Gulsiyat attended private educational centres and various preparatory classes, where she worked with speech therapists and pathologists. Finally, hard work and constant training paid off – the girl was able to speak.
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"The big problem is that we have few educational centres," Sveta said. "And they were opened only thanks to the parents of children who have hearing impairments."
According to Alieva, there is practically no assistance from the state. Except for disability benefits. There are also problems of access to education.
"For example, you can place the child to a kindergarten only if you deal with the management," Alieva said. "People usually do not know to talk and work with such children. Many teachers or educators have no idea what the cochlear device is, once they see the device, they immediately attach a stigma to the child."
More than five years have passed after the cochlear implant was placed to the girl. All this time some family member periodically flies to Turkey to buy or replace some consumables.
"Various wires or battery should be replaced periodically. And there is no representative office of the company in Kyrgyzstan," Alieva said. "Therefore, we have to raise money all the time to go there. We are looking for funds from different sources. Sometimes we take money from those who can lend it at no charge."
Moreover, the cochlear implant itself requires proper handling and good care. Even its charging should be done under certain rules.
"For example, you can place the child to a kindergarten only if you deal with the management," Alieva said. "People usually do not know to talk and work with such children. Many teachers or educators have no idea what the cochlear device is, once they see the device, they immediately attach a stigma to the child."
More than five years have passed after the cochlear implant was placed to the girl. All this time some family member periodically flies to Turkey to buy or replace some consumables.
"Various wires or battery should be replaced periodically. And there is no representative office of the company in Kyrgyzstan," Alieva said. "Therefore, we have to raise money all the time to go there. We are looking for funds from different sources. Sometimes we take money from those who can lend it at no charge."
Moreover, the cochlear implant itself requires proper handling and good care. Even its charging should be done under certain rules.
Despite so many obstacles, Gulsiyat has a good progress.
"It is very difficult for us, both in terms of money and in moral terms. But we have been able to achieve a lot," Alieva said. "It is our big and significant victory that the girl can speak, write, and attends a regular school."
However, adults and children with hearing and speech impairments are in dire need of external support. According to Alieva, the state should pay more attention to opening of educational centres and increase of qualified personnel who can work and educate such children.
"It is very difficult for us, both in terms of money and in moral terms. But we have been able to achieve a lot," Alieva said. "It is our big and significant victory that the girl can speak, write, and attends a regular school."
However, adults and children with hearing and speech impairments are in dire need of external support. According to Alieva, the state should pay more attention to opening of educational centres and increase of qualified personnel who can work and educate such children.
Leading specialist of the Ministry of Education Saltanat Mambetova said to CABAR.asia that there are only three schools in Kyrgyzstan that accept hearing-impaired and deaf children. Two of them work in Bishkek and one in Kara-Suu district of Osh region. As for kindergartens, there are only two of them – one in Bishkek and one in Kara-Suu.
"Yes, we know that there are few of them in the country, but they work at full capacity," Mambetova said. "All children are accepted by request. There have been no cases of refusal in admission."
"Yes, we know that there are few of them in the country, but they work at full capacity," Mambetova said. "All children are accepted by request. There have been no cases of refusal in admission."
Saltanat Mambetova
Photo: edu.gov.kg
Photo: edu.gov.kg
Mambetova also noted that there are problems with the lack of sign language teachers in Kyrgyzstan, especially in the regions of the country.
"We teach sign language teachers only in one university – the Arabaev Kyrgyz State University. And the lack of staff is due to the fact that young people rarely choose the specialty of sign language teacher and prefer to work in Bishkek, rather than in the regions," the expert said.
"We teach sign language teachers only in one university – the Arabaev Kyrgyz State University. And the lack of staff is due to the fact that young people rarely choose the specialty of sign language teacher and prefer to work in Bishkek, rather than in the regions," the expert said.
According to Nazgul Turdubekova, director of "League of Defenders of the Rights of the Child" Public Foundation, the curricula published at the state level in Kyrgyzstan have already become obsolete as they were released back in the Soviet Union.
"The very approach of the state has shaped a stigmatising public attitude towards the people with disabilities, in particular, with hearing impairments," the expert said. "It is aimed at providing services to children in boarding schools isolated from the
"The very approach of the state has shaped a stigmatising public attitude towards the people with disabilities, in particular, with hearing impairments," the expert said. "It is aimed at providing services to children in boarding schools isolated from the
Nazgul Turdubekova
Photo: akipress.org
Photo: akipress.org
family, while the whole civilised world teaches hearing-impaired children in regular classes."
According to Turdubekova, the state should bring the law on education and the programme for the development of inclusive education in line with international standards.
According to Turdubekova, the state should bring the law on education and the programme for the development of inclusive education in line with international standards.
Saltanat Mambetova
Photo: edu.gov.kg
Photo: edu.gov.kg
Leading specialist of the Ministry of Education Saltanat Mambetova said to CABAR.asia that there are only three schools in Kyrgyzstan that accept hearing-impaired and deaf children. Two of them work in Bishkek and one in Kara-Suu district of Osh region. As for kindergartens, there are only two of them – one in Bishkek and one in Kara-Suu.
"Yes, we know that there are few of them in the country, but they work at full capacity," Mambetova said. "All children are accepted by request. There have been no cases of refusal in admission."
Mambetova also noted that there are problems with the lack of sign language teachers in Kyrgyzstan, especially in the regions of the country.
"We teach sign language teachers only in one university – the Arabaev Kyrgyz State University. And the lack of staff is due to the fact that young people rarely choose the specialty of sign language teacher and prefer to work in Bishkek, rather than in the regions," the expert said.
"Yes, we know that there are few of them in the country, but they work at full capacity," Mambetova said. "All children are accepted by request. There have been no cases of refusal in admission."
Mambetova also noted that there are problems with the lack of sign language teachers in Kyrgyzstan, especially in the regions of the country.
"We teach sign language teachers only in one university – the Arabaev Kyrgyz State University. And the lack of staff is due to the fact that young people rarely choose the specialty of sign language teacher and prefer to work in Bishkek, rather than in the regions," the expert said.
Nazgul Turdubekova
Photo: akipress.org
Photo: akipress.org
According to Nazgul Turdubekova, director of "League of Defenders of the Rights of the Child" Public Foundation, the curricula published at the state level in Kyrgyzstan have already become obsolete as they were released back in the Soviet Union.
"The very approach of the state has shaped a stigmatising public attitude towards the people with disabilities, in particular, with hearing impairments," the expert said. "It is aimed at providing services to children in boarding schools isolated from the family, while the whole civilised world teaches hearing-impaired children in regular classes."
According to Turdubekova, the state should bring the law on education and the programme for the development of inclusive education in line with international standards.
"The very approach of the state has shaped a stigmatising public attitude towards the people with disabilities, in particular, with hearing impairments," the expert said. "It is aimed at providing services to children in boarding schools isolated from the family, while the whole civilised world teaches hearing-impaired children in regular classes."
According to Turdubekova, the state should bring the law on education and the programme for the development of inclusive education in line with international standards.
Everything's at the parents' cost
When Aida turned five, she started to say some words and managed to attend a regular kindergarten. But only her family knows how difficult it was. Her mother, Asel Mairambekova, chair of the public association "Hearing together", told that they learned that the girl was deaf when she turned one year old.
"My parents were the first to notice it," Mairambekova said. "They noticed that Aida did not react to my voice, did not come when I called her."
When they passed a special test, parents learned that Aida was hearing-impaired. However, the problem was that some Kyrgyzstan-based hospitals made different diagnoses and to find out the exact diagnosis the family had to go to the Saint Petersburg Research Institute of Ear, Throat, Nose and Speech.
"They advised us to have the surgery as soon as possible while Aida was little," Asel said. "Doctors said that rehabilitation would be better and good results could be achieved."
When they returned home, Aida's family started to look for various ways of performing the surgery. When they learned about the quotas in Turkey, Mairambekova applied for it, but they learned that their turn would be only in two years. When searching for other options, Asel learned about the association "Hearing together", which was opened at the initiative of a group of parents of children with cochlear implants.
"At that moment, the association happened to cooperate with the German foundation, which helped financially with performing such operations," Mairambekova said. "We applied, were selected and they performed the surgery."
Now Aida undergoes rehabilitation, visits various teachers and even managed to attend a regular kindergarten. However, almost everywhere, according to Asel, they face various obstacles. For example, when passing a psychological-medical-pedagogical commission for establishing the diagnosis and receiving the benefits.
"Sometimes I have a feeling that ENT doctors taking part in commissions do not know what a 'cochlear implant' is," Mairambekova said. "They think that if the operation was performed, it's over now, the child is absolutely healthy, can hear, speak and we do not need the money. I have to explain to them that if the device is removed, the child will not hear anything – the child remains deaf. And if something gets broken in the implant, it needs to be replaced, which is expensive."
According to Mairambekova, there is generally no support from the state in Kyrgyzstan apart from benefits.
"For example, in Russia, they hold weekly rehabilitations after the surgery at the cost of the state, and we do not have such rehabilitations," she said. "Yes, there were quotas provided by Turkey, but they performed only surgeries and nothing else. Rehabilitation, buying of implants, devices, replacement, setting of cables – all these are at our own cost. Parents do everything and pay for everything themselves."
According to Asel, theoretically, hearing screening test must be available in every maternity home as it helps to identify the problem, if any, and to start acting. Moreover, another critical problem, according to her, is the lack of psychological aid.
She said that right after the diagnose is made, parents feel at a loss as they do not know what to do, where to go. So, doctors need to explain, refer and describe everything in a correct way and in plain language.
"My parents were the first to notice it," Mairambekova said. "They noticed that Aida did not react to my voice, did not come when I called her."
When they passed a special test, parents learned that Aida was hearing-impaired. However, the problem was that some Kyrgyzstan-based hospitals made different diagnoses and to find out the exact diagnosis the family had to go to the Saint Petersburg Research Institute of Ear, Throat, Nose and Speech.
"They advised us to have the surgery as soon as possible while Aida was little," Asel said. "Doctors said that rehabilitation would be better and good results could be achieved."
When they returned home, Aida's family started to look for various ways of performing the surgery. When they learned about the quotas in Turkey, Mairambekova applied for it, but they learned that their turn would be only in two years. When searching for other options, Asel learned about the association "Hearing together", which was opened at the initiative of a group of parents of children with cochlear implants.
"At that moment, the association happened to cooperate with the German foundation, which helped financially with performing such operations," Mairambekova said. "We applied, were selected and they performed the surgery."
Now Aida undergoes rehabilitation, visits various teachers and even managed to attend a regular kindergarten. However, almost everywhere, according to Asel, they face various obstacles. For example, when passing a psychological-medical-pedagogical commission for establishing the diagnosis and receiving the benefits.
"Sometimes I have a feeling that ENT doctors taking part in commissions do not know what a 'cochlear implant' is," Mairambekova said. "They think that if the operation was performed, it's over now, the child is absolutely healthy, can hear, speak and we do not need the money. I have to explain to them that if the device is removed, the child will not hear anything – the child remains deaf. And if something gets broken in the implant, it needs to be replaced, which is expensive."
According to Mairambekova, there is generally no support from the state in Kyrgyzstan apart from benefits.
"For example, in Russia, they hold weekly rehabilitations after the surgery at the cost of the state, and we do not have such rehabilitations," she said. "Yes, there were quotas provided by Turkey, but they performed only surgeries and nothing else. Rehabilitation, buying of implants, devices, replacement, setting of cables – all these are at our own cost. Parents do everything and pay for everything themselves."
According to Asel, theoretically, hearing screening test must be available in every maternity home as it helps to identify the problem, if any, and to start acting. Moreover, another critical problem, according to her, is the lack of psychological aid.
She said that right after the diagnose is made, parents feel at a loss as they do not know what to do, where to go. So, doctors need to explain, refer and describe everything in a correct way and in plain language.
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"We understand that the state is not in the best financial condition, but we would like to see that more attention is paid to hearing and speech impaired children," she said. "And everyone should understand that the problem cannot be solved by one operation; follow-up rehabilitation, which is very expensive to parents, is very important."
Speaking to CABAR.asia, Nazgul Cholumova, head of the Department for the Development of Social Services for Persons with Disabilities and Senior Citizens, said that in 2019 Kyrgyzstan ratified the UN Convention on the Rights of Persons with Disabilities. This means that the country is committed to providing accessible environment and infrastructure to persons with disabilities.
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"In the framework of the Convention, we have developed a state programme "Accessible country for persons with disabilities and people with limited mobility," Cholumova said. "The programme specifies various standards that are expected to make life much easier for persons with disabilities, including hearing and speech impaired people."
Moreover, Cholumova said, in 2021 the Cabinet of Ministers adopted a resolution on the approval of the procedure for the provision of sign language interpretation services. The purpose of the document is to ensure access to sign language interpretation services whenever it is necessary to protect the rights and interests of persons with disabilities.
"In other words, some foundations for improving the life of hearing and speech impaired persons have already been laid," Cholumova said. "And the 'Accessible country' programme will help us to further promote all ideas. Now it is in the Cabinet of Ministers, and we are waiting for its approval."
"In other words, some foundations for improving the life of hearing and speech impaired persons have already been laid," Cholumova said. "And the 'Accessible country' programme will help us to further promote all ideas. Now it is in the Cabinet of Ministers, and we are waiting for its approval."
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According to Cholumova, it cannot be ignored that the implementation of every stage of the programme stops at funding. However, according to her, the programme is needed, so the state must raise money for it.
This article was prepared as part of the Amplify, Verify, Engage: Information for Democratisation and Good Governance in Eurasia project implemented by IWPR and funded by the Norwegian Ministry of Foreign Affairs, and mentoring program of the Development of New Media and Digital Journalism in Central Asia project implemented by IWPR with the financial support of the UK Government. The content of the article does not reflect the official position of the IWPR, the Norwegian Ministry of Foreign Affairs, or the Government of the United Kingdom.
Авторы
Айгерим Конурбаева
Редактор
Наталья Ли
Верстка
Акылай Татенова
Фото на слайдере
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