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December 10, 2013

Experts with Deafblindness Increase Interaction in Uzbekistan

Two JICA experts with visual and hearing impairments visited Uzbekistan in early October to transfer knowledge and skills and open the door to a better life for people with deafblindness.

photoPeople with deafblindness take a walk in Tashkent, Uzbekistan, to check accessibility.

Dec. 3 was the International Day of Persons with Disabilities, which commemorates the adoption of a World Programme of Action concerning Disabled Persons at the U.N. General Assembly on this day in 1982.

By emphasizing approaches relating both to people with disabilities and to a society to realize the vision of “Inclusive and Dynamic Development,” the Japan International Cooperation Agency (JICA) has worked on joint initiatives with people with disabilities in various countries through “empowerment,” to allow people with disabilities to perform key roles to change society, and “mainstreaming,” for accommodating views that facilitate the convenience of people with disabilities everywhere in the society.

The least-assisted existence

photoAkiko Fukuda, left, communicates with an attendee with deafblindness using tactile sign language.

“First and foremost, I would like people to understand what our situation is like. Once I let go of the hand of my interpreter-guide (an expert for supporting people with deafblindness), it is completely dark and I hear nothing. I cannot know who and what are around me and cannot figure out where I am. Without a Braille watch that I can touch and know the time, I would not know what the time is. Though there are things that I can feel with a sense of my touch and smell, people with deafblindness see and hear what they cannot through interpreter-guides. Starting from what is on the table for breakfast, they communicate every single piece of information to us,” said Akiko Fukuda, an expert with visual and hearing impairments.

Deafblindness, in which a person has both visual and hearing impairments, is considered to be one of the most severe conditions to assist because there are substantial barriers to accessibility both in mobility and communication. Although it varies by country and environment, one in every several thousand people is reported to be deafblind. According to a survey implemented by the Japan Deafblind Association, there are an estimated 23,000 people with deafblindness in Japan, only 5 percent of whom are using assistance systems or services.

The most famous figure with deafblindness in the world could be American Helen Keller (*1). Beside this heroine, who greatly influenced social welfare and welfare for people with disabilities in the 20th century, there stood Anne Sullivan (*2), known as Miss Sullivan in the movie “The Miracle Worker.” This film teaches us that learning a communication method, and the training and securing of support specialists, are required, in particular, to promote the independence and social participation of people with deafblindness.

As the first JICA experts with deafblindness

photoThe conference venue is filled with the excitement of the many participants.

In early October, experts Fukuda, and Miwa Muraoka, who is also an actively working expert with deafblindness, set foot in Tashkent, the capital city of Uzbekistan, with four interpreter-guides and a physical assistant. Although JICA has focused on sending people with disabilities as Japan Overseas Cooperation Volunteers, Senior Volunteers and as experts in the past, it was the first time it sent experts with deafblindness.

Prior to this, in 2011 JICA invited seven trainees to Japan from four countries in Central Asia and implemented training to promote mainstreaming and empowerment of people with disabilities in order to strengthen organizations of people with disabilities in each country. As part of follow-up cooperation to that event, the two made a visit to Uzbekistan to conduct training sessions.

In Uzbekistan, it is estimated that over 800,000 people are registered as people with disabilities out of its population of 27 million. Most of the people with deafblindness are hardly known by anyone except their family and stay indoors, living quietly. They are not able to communicate well with others and some tragic events actually have been reported, such as a family member abandoning hope and committing a double suicide with the child with deafblindness.

First, a survey of current conditions of people with deafblindness was implemented in the Tashkent and Fergana regions in advance of the training. Based on the outcome, an activity plan was formulated, with three pillars: “empowerment of people with deafblindness,” “transfer of basic knowledge and skills required for interpreting and assistance for people with deafblindness” and “building a network of support organizations of and for people with deafblindness.”

Creating a foothold in social advancement

photoDuring a practical training session for explaining situations and assisting mobility, an attendee assists a person with deafblindness walking down stairs.

More than 100 people from organizations of the deaf and hard-of-hearing, organizations of the blind and governmental organizations in Uzbekistan participated in an open seminar held Oct. 8 in Tashkent. Over half the participants were from outside Tashkent, including such places as Samarkand, Bukhara and Fergana.

To enable communication, interpretation for the seminar was carried out in the following manner: Muraoka made a speech in sign language and the interpreter-guides translated it into verbal Japanese. Then a verbal interpreter translated it into Russian and Uzbek, and an Uzbek sign language interpreter converted that into Russian and Uzbek sign language.

In addition, information on the current situation of people with deafblindness and challenges in Japan and on Japan's assistance systems were introduced through the screening of a video. The daily lives of the experts with deafblindness also were shown through video and photos. Starting with the question “What can be done for people with deafblindness to participate in society?” there was active discussion of an agenda for building an assistance system in Uzbekistan.

photoSeminar attendees simulate deafblindness with eye-coverings and headsets.

Also, at a three-day training course for interpreter-guides after the seminar, a variety of communication methods of people with deafblindness that were little known in Uzbekistan were introduced, including tactile sign language, low-vision sign language, print on palm (writing on the palm) and finger-Braille, as well as interpreting and mobility assistance. The course, including both theory and practice, was attended by enthusiastic participants, and 21 people became aspiring interpreter-guides.

Contact through tactile sign language and the like

photoMiwa Muraoka, right, instructs a person with deafblindness on how to use a white cane.

Before the seminar and the training course, from Oct. 5 to 7, workshops were held to investigate the actual situation of children and adults with deafblindness. They were attended by 17 people throughout Uzbekistan. The attendees had the opportunity to directly communicate with both of the experts using tactile sign language, low-vision sign language and finger Braille. There was also instruction in the use of a white cane.

“Normally I have no other choice than staying at home, but I am very happy to meet many people and get to know various new things through this event. Communicating with Japanese people with deafblindness, their words interpreted through tactile sign language, was truly a valuable experience,” said Sojida Tajiyeva, one of the attendees from Tashkent city.

Muraoka said, “The hardest thing this time was to secure the interpreter-guides who traveled with us. We want them around all the time, but in reality it is difficult because of their personal circumstances. To assign full-time interpreter-guides for nine days was a real hard job. Also, we found that Tashkent was less convenient than Japan in some ways. For example, the foot pavement was quite rough, even in the city.

“I was most pleased when the gloomy facial expressions of Uzbek people with deafblindness who had given up on going outside changed dramatically to smiles through the seminar. The Japan Deafblind Association has supported welfare for people with deafblindness domestically and internationally, as well as supporting domestic training of interpreter-guides. However, it has not reached as far as international cooperation. I am very happy that we achieved it this time.”

People with deafblindness become positive and proactive

photoA participant in the training course, right, practices interpretation for a person with deafblindness.

On the last day, the attendees with deafblindness improved so much that they were able to express their opinions proactively with the help of the participants in the training course for interpreter-guides, as well as being able to understand remarks from other attendees with deafblindness. Attendees who were less-expressive at first became positive and proactive.

Turgun Mustakimov, a person with deafblindness from Tashkent city, said, “It was very encouraging to see people with deafblindness from Japan living independently and participating in society. I want to learn Braille and other new skills more.”

During the discussion, one person with deafblindness said that like in Japan, an association of and for people with deafblindness is necessary in Uzbekistan also.

Fukuda said, “Though I can produce sounds, 100 people with deafblindness are different in 100 ways. They are different in their ability and methods for reading and writing, in age, in communication styles such as oral-based languages and sign languages. This time two different experts with deafblindness were present and it might have helped them understand the diversity in deafblindness.

“I will be happy to provide support again if any country requires us next.”

Through this cooperation, the existence of many people with deafblindness in various parts of Uzbekistan was brought to light and the foundations of a network of supporting organizations was built.

Following up with the relevant parties, JICA will continue to review the possibilities of establishing a nationwide alliance of local supporting organizations of and for people with deafblindness, training courses for interpreter-guides and regular opportunities for social interaction by and for people with deafblindness.

(*1) Born in Alabama, U.S., in 1880, she lost her hearing, sight and voice at the age of 2 from a high fever. Through the keen coaching of Anne Sullivan, she obtained communication methods. She traveled around the world and devoted her life to the education and welfare of people with physical disabilities.

(*2) Born in Massachusetts, U.S. in 1866. She supported Helen Keller as her teacher and friend for over 50 years and contributed to social welfare activities together with Keller. She herself was visually impaired.

photoParticipants who completed the training course for interpreter-guides (Miwa Muraoka, sixth from right, front row, and Akiko Fukuda, to Muraoka's left.)

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