Yuji Tako
Trustee, Japan Deafblind Association

Deafblind people, who have both visual and hearing impairments, deal with a double information disability. It is difficult or impossible for them to use the other sense to compensate for their disability, as people with visual or hearing impairments usually do. For severely deafblind people, it becomes extremely difficult to communicate with those around them, understand the situation, and obtain information from the mass media or from people nearby. In addition, it is even more difficult and dangerous for them to walk or use transportation alone than it is for people who are solely visually impaired. For these reasons, the creation of organisations related to deafblindness and the systematization of welfare services for deafblind people took place several decades after those for people with a single disability. As I look back over the process leading to my becoming connected with deafblind organisations, I would like to summarise the development of deafblind welfare and the issues it faces.

I was born completely deaf, and was trained to speak out loud and to lipread by watching the shape and movements of the speaker’s mouth in the kindergarten and lower elementary grades of a school for the deaf. From around the time that I moved up to elementary school, eye conditions such as tunnel vision, photophobia, and night blindness appeared, and my vision began to decrease around fourth grade. My sight could not be corrected with glasses, but at school, it was not believed to be anything more than shortsightedness. I was able to take classes like Japanese or arithmetic without many problems, but during music or PE, I could not move in time with everyone else or cross the balance beam, and got suspicious looks from those around me.

I moved to a deaf school in a neighbouring prefecture when I became a junior high school student; the atmosphere was different from that at my previous school, which had devoted itself entirely to educating us through spoken language. Sign language was used openly in front of the teachers, and I gradually became able to talk with the people around me with sign language mixed in. However, since my field of vision had narrowed, I was unable to understand the sign language of students who did not also speak with their mouths, and it took all my efforts to follow who was speaking in a group conversation.

Just after graduating from senior high school, my doctor told me about my eyes. The pronouncement that I would lose my sight completely was one that I had never even imagined. In order to try and pull myself out of the depths of despair, I started going to a Braille library, and learned the basics of Braille in a class for late-blind people. I felt a strong resistance to Braille, which only represents the phonetic kana characters, because I had not learned any words by hearing them, but it taught me more about Japanese.

From my early twenties to my late thirties, I worked winding coils, compensating for my worsening sight with strong glasses or a watchmaker’s magnifying glass. In the period when I started work, I was able to follow what someone said to me by watching their mouth and their sign language, but I gradually moved to written conversations with a felt-tip pen, and was no longer able to make out sign language. Around the time when I stopped work, I needed the person I was talking with to write the characters with their finger on the palm of my hand. Ever since I was at the deaf school, I had often been unable to join in exchanges between large numbers of people, and came to feel that being alone in my room was preferable to feeling isolated in a group. I could not watch television, so I devoted myself to puzzles.

Around the time when I quit my job and was receiving training in Braille and walking around, I was introduced to finger Braille by a completely blind fellow student whom I got to know at the rehabilitation centre. One day, while I was practicing reading finger Braille over and over, and the song which was playing over the radio was tapped onto the fingers of both my hands, I suddenly felt “This is something that will work for me!” This was the first radio broadcast that I had ever heard in my life, and I was filled with joy at being able to share that moment and place with everyone.

The “Journeying Together with Satoshi Fukushima Group” (hereinafter, the “Journeying Together Group”) was originally a group to support Professor Fukushima in his life as a university student, but when I first joined an overnight event, a few deafblind people were there. Momentum was gathering for a shift from supporting a single deafblind individual to supporting all deafblind people.

In the winter of 1988, the “Preparatory Group for the Establishment of a New Association of Deafblind People” (hereinafter, the “Preparatory Group”) got underway, and deafblind people and their supporters from different areas gathered at the regular monthly get-togethers. At these meetings, students and members of sign language and Braille groups acted as volunteer interpreters and guides for deafblind people. The deafblind people each had different ways of talking with those around them, so there was also a broad range of interpreting methods: it was a communication bazaar, so to speak. I was not left behind, and I felt glad that I had participated and eager to attend the next time, so these meetings became the driving force behind my deafblind activities.

At a conference of deafblind people in America which I attended together with other deafblind people and volunteer supporters in the summer of 1990, deaf people and wheelchair users served alongside able-bodied people as interpreters and guides for deafblind people. Many deafblind people using low vision sign language or tactile sign language could be seen at the venue, but there were also deafblind people who could not use sign language and quietly sat in one corner of the venue reading written Braille translations. I felt that we must not forget the existence of this minority who tended to be left out of the overall proceedings. When I told the person in charge of the medical consultation corner that I also had balance dysfunction, I was told that it was due to “Usher syndrome”, something that was not widely known about in Japan at the time.

The “Japan Deafblind Association” (hereinafter, “the Association”) was established in the spring of 1991, and projects for deafblind people and their supporters nationwide began. The first “National Convention of Deafblind Persons”, modelled on the American conference, was held that same summer, and continued as a major event each August. “Communica”, an information magazine about deafblind people, was launched and is published twice a year as one aspect of our awareness-raising activities.

Around the same time as the founding of the Association, the “Tokyo Deafblind People’s Society” (hereinafter, “the Society”) was set up as a local community organisation, taking over the role of the monthly gatherings of the Preparatory Group. We welcomed participants not only from Tokyo but also from neighbouring prefectures to our gatherings. In 1991, there were only two local organisations of deafblind people, in Tokyo and in Osaka, but they spread to regions throughout the country thanks to the Association’s annual conventions.

Work to develop and dispatch “interpreters and assistants for deafblind people”, who would take on the work of interpreting and mobility assistance (guiding), began at the Association almost immediately after it was founded. Welfare services tend to spread out from the centre to local areas, and projects to develop and dispatch “interpreters and assistants for deafblind people” living within Tokyo also began at the Society in 1996. Training workshops included not only lectures, but also practical exercises in conversations and interpreting using a variety of communication methods, as well as in mobility assistance. Immediately after the Association’s project began, people who had acted as interpreters and guides since the days of the Preparatory Group continued in those roles, but students who had completed the training courses offered by the Association and the Society gradually registered and became active. In 2009, the first “Support Centre for the Deafblind” in the country was established at the Society, taking over the work of development and dispatch, and study and training courses suited to the diverse needs of deafblind people came to be held. An accompaniment support programme for deafblind people to use when going out also began in 2018.

In these ways, public welfare services for deafblind people which did not exist in the period when I had just connected with the Journeying Together Group have gradually become more comprehensive. I am always grateful to the interpreters, assistants, and people involved with accompaniment support, who are supporting the daily lives and social participation of deafblind people even during this COVID-19 pandemic. In the days when I attended deaf schools, there was no collaboration at all with blind schools or hospitals, nor was there appropriate instruction during classes nor guidance on career paths. Through the awareness-raising activities of the Association and the Society, understanding of deafblind children has deepened, and educational, medical, and other institutions have come to work together. I have experienced rejection by a school named after Helen Keller offering training in massage, acupuncture, and moxibustion to late-blind people and by a national vocational rehabilitation centre for disabled people on the grounds of my deafblindness; and issues still remain when it comes to vocational training and employment for deafblind people. My ardent wish is for the deafblind people who come after me to gain the cooperation and support of those around them in order to develop interpreters, assistants, and people involved with accompaniment support and ensure that these meet the diverse needs of deafblind people, overcoming the remaining issues one by one.