13 Apr Life in silent darkness: deafblind people in Uzbekistan
Illustration: Eldos Fazylbekov
I wrote this article a year ago when it was published in Russian at Gazeta.uz on 7 January 2019. Unfortunately, I have not seen any response from the Uzbek government and relevant state agencies to provide support for deafblind people. During the pandemic of COVID-19 and the strict quarantine measures, self-isolation and social distancing deafblind people may be disproportionately affected as their condition was already aggravated without access to social services and support they need and lack of state acknowledgement of their existence. Therefore, I decided to publish this article in English here and now.
In the 70s of the last century, the so-called Zagorsk experiment was conducted when four young people with dual impairments of both vision and hearing entered the psychology department of Moscow State University on equal terms with other non-disabled applicants. The name of the experiment was associated with a boarding school for deafblind children in Zagorsk (now Sergiyev Posad), which is now called Sergiyev Posad Boarding School for Deafblind Children and Young Disabled People. The deafblind children, who later successfully graduated from Moscow State University only one year later than other non-disabled students, studied in this boarding school. Two of the Zagorsk children continued their academic activities and received doctorate degrees and are still contributing to science. They are now working at responsible positions in public organisations to support deafblind children and adults in Russia.
In Soviet times, the Zagorsk boarding school was the only institution in the Union where they developed a special programme for training children with complete or partial loss of vision and hearing. As in other republics of the former Union, there was no such boarding school, deafblind children were sent from all over the USSR to this institution. However, after Uzbekistan gained its independence in 1991, the connection with the Zagorsk boarding school was broken. Therefore, deafblind children in Uzbekistan lost the opportunity to learn and to be included in society. Currently, there is not a single state institution or NGO which specialises in providing social support to deafblind children and adults in Uzbekistan. The exception is the Cultural Centre for Deaf People of Tashkent city under the Society of the Deaf of Uzbekistan, which in 2016 included support for deafblind people into the Centre’s scope and objectives under the organisation Charter.
Deafblindness in Uzbekistan
Deafblind children and adults stay largely invisible in Uzbekistan, where the definition of deafblindness is not legally or socially defined. According to the law “On social protection of disabled people in the Republic of Uzbekistan”, a disabled person is considered to be “a person who due to physical, learning, mental or sensory impairments, is recognised as disabled by the law and needs social assistance and protection.” The national legislation does not mention the possibility of having dual types of sensory impairments – in sight and hearing. Moreover, there is no officially recognised category of “deafblind people” and the term does not translate well into Uzbek. As a result, they are often overlooked in policy-making and there is limited official social support and protection available to them.
Deafblind people can undergo an examination by special Medical-Labour Expert Commissions (VTEK) and obtain the status of a disabled person of the first group either by sight or hearing (the highest degree of disability in Uzbekistan based on the severity of impairment), but in this way, they are equated to persons with a single impairment. For example, persons with a single impairment, unlike deafblind people, are capable of self-care and can be relatively independent. However, deafblind people require constant additional support, which requires additional finances. In this regard, it seems that equating deafblindness to the first group of disability and the corresponding size of the disability benefit since childhood (396,500 Uzbek so’m or less than 50 U.S. dollars per month) is not an adequate measure for their social support.
How many deafblind people are there in Uzbekistan?
According to the World Health Organisation, there are 5–8 deafblind people per 100 thousand people in the world. Based on these figures, we can assume that more than 2500 deafblind people live in Uzbekistan. Due to the lack of a legislative definition of deafblindness and the classification of deafblindness by the medical-labour expert commissions, our State Statistics Committee does not possess statistical information on deafblind people.
In the UK, the most complete data on deafblind people is collected by the well-regarded charity, Sense, which has identified about 390 thousand deafblind people. According to a survey conducted by the Japan Deafblind Association in 2012, about 14,000 people in Japan live with double sensory impairment. The All-Russian Census of Deafblind People in 2014 identified 3,600 most active deafblind people in the country. However, in reality, there may be much more of them in Russia – from 12 to 15 thousand deafblind people, considering that they are very difficult to identify and many of them are residents of specialised institutions.
Recently there has been an increase in the number of deafblind people worldwide due to an increase in the life expectancy of the populations and a simultaneous increase in the number of acquired visual and hearing impairments. It is believed by some that the use of all kinds of gadgets (assistive technologies) leads to a premature worsening of sight. Besides, prolonged use of headphones may cause premature onset of hearing problems. There is good evidence for the latter. For instance, the same British charity Sense predicts that by 2035 the number of deafblind people in the UK will increase to 600 thousand people.
The causes of deafblindness in newborns and children can be related to an increase in the number of premature births, medical complications during pregnancy and childbirth, including cerebral palsy. There are also several syndromes, including Asher syndrome, CHARGE syndrome, congenital rubella syndrome and Down syndrome, which can lead to deafblindness. Therefore, it is without any doubt that there is a certain number of deafblind people in Uzbekistan who remain still officially unidentified.
Deafblind people in a “vacuum of information”
In many developed countries or even in the countries of the former Soviet Union, there are social services available for deafblind people, which are subsidised by the state. For example, in Russia, from January 1, 2018, provision of Russian tactile sign language amounting to 84 hours per year to each deafblind citizen and up to 240 hours per year for citizens with total deafblindness is guaranteed by law at the expense of the federal budget.
There is still no such service in Uzbekistan even for deaf people, not to mention people with deafblindness. According to Article 9 of the Law “On Social Protection of Disabled Persons in the Republic of Uzbekistan”, state bodies, enterprises, institutions and organisations are obliged to create conditions for people with disabilities to have unhindered access and use of the necessary means of communication and information. However, in practice, this aspect of the law is not fully implemented for deafblind people in Uzbekistan, and as a deafblind professor of Tokyo University Satoshi Fukushima said they are remaining in an “information vacuum”.
A tactile (hands-on) sign language service is essential for the inclusion of deafblind people in our society. We would not have learned about the hidden talents of the Zagorsk children if they were not provided with personal interpreter-guides who accompanied them during lectures and seminars. We would not have learned about professor Satoshi Fukushima, the first deafblind student in Japan, if not for the constant support of his mother and his dedicated interpreter-guides. We also would not have known about the famous Helen Keller, if not for her gifted assistant translator Ann Sullivan, who was able to find how to approach a deafblind girl.
I believe that in Uzbekistan there are many so-called Zagorsk children, professors or writers among deafblind children and adults. The most important thing is to find an individual approach to everyone and to believe in their hidden talents. Our stereotypical thinking about deafblind people can deceive us, arguing that deafblind people are completely helpless. However, if you provide them with the necessary conditions and opportunities, they can become equal members of our society.
In addition to the tactile sign language interpretation service and specially trained interpreter-guides, deafblind people need expensive rehabilitation tools, such as the Braille display and the corresponding screen access software for deafblind people, white canes, Braille clocks, which help to get information, as well as high-quality hearing aids. A deafblind person is not in a position to acquire the above-mentioned means of rehabilitation for the current amount of disability pension in Uzbekistan, which must be imported into our country.
First steps to support deafblind people in Uzbekistan
In September 2018, representatives of the Cultural Centre of Deaf People of Tashkent had the opportunity to participate in the first Asian Deafblind Conference in Japan and familiarised themselves with the activities of the conference organiser – the Japan Deafblind Association. Deafblind people and their interpreter-guides from other six Asian countries including Korea, Nepal, Malaysia, Singapore and India took part in the conference. We were particularly impressed by the work of the Tokyo Deafblind Support Centre, which provides various training programmes for deafblind and conducts training courses for interpreter-guides, thanks to subsidies from the Tokyo Metropolitan Government.
The first steps to improve the lives of deafblind people in Uzbekistan were made in early October 2013, when the Cultural Centre for Deaf People in Tashkent, in cooperation with the Japan International Cooperation Agency (JICA), carried out the project on “Assistance in providing communication methods for deafblind people in Tashkent – raising awareness about deafblindness and their interpreter-guides.” A training workshop was organised with the involvement of Japanese deafblind experts who shared their experiences in developing services and support systems for deafblind people in Japan. The project also carried out a three-day intensive training for deafblind and sign-language interpreters from all over Uzbekistan, and as a result, 21 certified interpreter-guides for deafblind people were trained for the first time.
A turning point in the life of an Uzbek deafblind woman
Below is an excerpt from the story of a deafblind woman from Tashkent who, having been born deaf, completely lost her sight, her children, and all meaning in life:
“I was born in 1974 with congenital hearing impairment in Tashkent, a former Soviet republic and currently Uzbekistan. At the age of five, I went to the pre-school at the specialised boarding school No. 102 for children with hearing impairments. When I was 7 I started my first grade at the same school and finished it in 1988. During my school years, I had good eye-sight but was diagnosed with eye cataract. In 1992 (at the age of 18) I had an arranged marriage with a deaf man, whom I met for the first time with his mother (my future mother-in-law) at the specialised Training and Production Enterprise for persons with hearing impairments where I worked as a seamstress. Even though I had a boyfriend, my parents and my future husband’s parents insisted on our marriage and immediately arranged it without my involvement. In 1994, we had our first baby boy. My eyesight had slightly deteriorated after giving his birth.
In 1997, my first son suddenly died as he was circumcised even though he had a high fever. Since marriage, I have been living in an extended household with my mother and father-in-law and the other three families of my husband’s brothers. Nobody helped us at that time, nobody called an ambulance and did not support us in looking after our child. The second time I got pregnant I had a miscarriage of a four-month-old child because I caught influenza. Then I had another miscarriage of a 5,5 months child. I had a feeling that with each miscarriage I was continuously losing my vision. I became nervous as I started not seeing well in the dark, I was experiencing chicken blindness. I could not help at home anymore and often get sick, but I never thought that I would somehow become blind.
In 2001, I got pregnant again, a baby boy was born, but he lived only for several months. I got pregnant for the fifth time in 2003 and gave birth to my only living daughter. She is now 15 and at her 10th grade at the secondary school. After my last childbearing my eyesight deteriorated in one eye. My mother decided to support me in looking after my new-born daughter and took her home for three years. The turning point in my life happened in 2011 when I lost my sight and became a deafblind person. I lost my job at the enterprise where I had been working as a seamstress. The fact that I knew sign-language helped me a lot to communicate with others. Now I am not working anywhere and spending whole days at home. My husband changed his job to be able to look after me during the day time until my daughter comes from school. I would like to have a job at home to calm my nerves by doing something. I sometimes spend time sitting on the chair in the street, but I would like to walk more. In the future, I would like to find a suitable job and abandon worklessness.”
How can we support deafblind people in Uzbekistan?
First of all, it is necessary to include the definition of deafblindness and the category of deafblind people in the national legislation. This can be done through ratification and implementation of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Including the definition of deafblindness in the legislation of Uzbekistan will allow the medical-labour expert commissions to register deafblind people and recognise them not as merely blind or deaf people, but as those who need additional social assistance and protection due to dual impairments.
In its turn, the State Statistics Committee of Uzbekistan and other relevant state bodies should start collecting data on deafblind people and their socio-economic situation. Research institutes in the social sphere can also participate in this process and conduct surveys among deafblind children and adults, as well as their family members, to identify and study the problems they are facing. We can also learn from the Russian experience of conducting a census of deafblind people. Attention should be paid to students of specialised boarding schools and institutions for deaf and blind people since they are often not included in the official data.
Establishment of state and non-governmental institutions and charity foundations are needed to provide social support to deafblind people and provide them with the technical means of rehabilitation. To implement this, Uzbekistan needs to learn from the experience of supporting deafblind people in the UK, Japan, Russia and other countries, and to establish active cooperation with organisations of these countries to provide educational opportunities for deafblind children and adults, as well as to train specialised interpreter-guides for them. At the same time, strong state support of the existing organisations is needed through the provision of subsidies from the state budget for the implementation of social projects to support deafblind people in Uzbekistan.
Training of interpreter-guides for deafblind people can be organised by creating specialised courses for sign language interpreters and sign-language teachers based on existing higher education institutions – the faculty of “Special Pedagogy” at the Tashkent State Pedagogical University and the faculty of “Social Work” at the National University of Uzbekistan and other relevant universities throughout the country. It is necessary to develop and combine successful solutions and practices which are available in other countries and will provide deafblind people with opportunities for personal development and inclusion in our society.
Finally, it is necessary to believe in the abilities of deafblind children and adults and to change the stereotypical thinking of the Uzbek society, that they are not capable of achieving much due to dual sensory impairments. They want to work and “abandon worklessness” for which we need to provide them with accessible livelihood opportunities. Continued segregation and discrimination based on deafblindness increase the likelihood of mental and other disorders, as well as suicidal situations among deafblind people. The Uzbek state and society should become the “guides” of deafblind through silent darkness to the world of light and sounds, providing them with accessible information, knowledge and skills, and decent work.