Fumiko Uda
Former Chair, Osaka City Association of Hard of Hearing and Late-Deafened People,
A specified non-profit organisation

When the contract ended on 31 March this year, I handed over our notetaking work, a project outsourced to us by Osaka City, to another organization. I was 52 years old, and had been entrusted with this project for 23 years. I would like to look back here over my busy days rushing here and there for this notetaking project, as the person with overall responsibility for development, training, and dispatch, seeking to accept every request for communication support with the same level of notetaking, wherever and whenever it was needed.

1. Self-introduction

It was a few months since I had returned to work at a hospital with an emergency department after six or seven years away due to marriage and raising children. Everything began one day when I could not hear the ambulance’s siren, and noticed that I had hearing problems. While I was still wondering what was happening, I became unable to hear the telephone or the doorbell at home.

I went to consult with the ear, nose, and throat department, all the while thinking that the issues were probably caused by stress. I was stunned by the diagnosis: “Progressive hearing loss of unknown cause, which may lead to complete deafness in the near future. Sensorineural hearing loss, with hearing corresponding to Level 3 for people with physical disabilities”.

My work as a nurse gave me a sense of purpose. I had intended to go on working as long as I could once I was free from child-care responsibilities, but I felt considerable anxiety about working in a life-or-death setting with a hearing impairment, so I quit my job after just one year.

The “near future” estimated by the doctor arrived in around two years. Only 70dB remained of sounds at 250Hz; no other sounds registered on the scale. I had completely lost my hearing. My greatest difficulty was communication. However much I wanted to say, I could not hear the other person’s words. It was frustrating, irritating, annoying, and upsetting. Even though I had a certain amount of medical knowledge, when I became the one affected, I lost hope, feeling that I was the only person in the world with ears like these.

During the five years or so until I set my teeth and decided to live as best I could without being able to hear, I suffered mental torment, as though dragging myself around on the ground, struggling with the great hurdle of accepting my disability.

2. The search for my place

After pulling myself together, I studied sign language alongside people who were aiming to become interpreters, and also became friendly with deaf people. However, this was not a place where I could feel completely at ease, being neither able-bodied nor deaf.

In 1987, I heard the news that the annual congress of the All Japan Association of Hard of Hearing and Late-Deafened People would be held in Osaka, and joined as an unofficial participant. I thought that there would probably be sign language interpreting, but I learned that the congress would take place through writing, and my preconception that hearing-impaired = sign language interpreting was completely overturned. Those familiar Japanese characters! Afterwards, I would learn that this was called “notetaking”: it was the process of summarizing the speaker’s words, writing them with permanent marker on a sheet prepared for that purpose, and enlarging them and projecting them onto a screen with an overhead projector, to communicate to many hearing-impaired people the content of what was being talked about right then.

Young and old men and women who were deaf or hard of hearing were full of energy as they gathered at the conference. Even though it was their first time to meet one another, they were unafraid to say, in Osaka dialect, “What did you say? I can’t hear you! Say it again...! or “Write it down”. I felt sure that this was my place, and so the congress became a turning point in my life.

3. The need for notetaking

Deaf people who have grown up with sign language as their native language do not need interpreting when they are in a discussion with other deaf people. However, as the number of late-deafened or hard of hearing people like us grows, it becomes difficult to understand one another without communication support through notetaking, and the discussion goes nowhere.

Notetaking began in the latter half of the 1960s. It is said that the trigger for its spread nationwide was when hard of hearing people attending a conference of organisations for the advancement of hard of hearing people in Kyoto in 1973 realised that they could understand each other through notetaking, and began working to make it widespread in their own areas.

In terms of public programmes, the development of notetaking volunteers was added to the “‘Bright Lives for Disabled People’ Promotion Project” and the “Disabled People’s Social Participation Promotion Project” in 1981, and the dispatch of these notetaking volunteers was added in 1985.

However, this work was something that local authorities could choose and implement from among many other projects, and so was said to be a “menu project” (an elective project).

4. Initiatives in Osaka City

The development and dispatch of notetaking volunteers began in Osaka City in 1991, as one of these “menu projects”. The Osaka Deaf Association was in charge. In this period, the curriculum and textbooks were left to the discretion of each area.

I was the Chair of the Osaka City Association of Hard of Hearing and Late-Deafened People at the time, so I made an appearance at the classes just for the “hard of hearing experience” programme. I was very upset to be told by the host, a deaf person, that “Sign language is enough for us. We are developing notetakers for the sake of the hard of hearing”, and my wish that we, the ones who needed notetaking, could train the notetakers grew stronger.

I made numerous requests to the Welfare Office of Osaka City to let us run the notetaking project. However, it was very difficult to gain their agreement. Their main concern was that we were a voluntary group with no formal legal status, and only 60 members.

5. Entrusted with the notetaking project

In the autumn of 1998, I was contacted by the Welfare Office to ask whether I would like to try running the project.

This was just when the “Committee to Consider the Notetaking Volunteer Development Curriculum” had been set up by the Ministry of Health and Welfare (now the Ministry of Health, Labour and Welfare), and I, as part of the Notetaking Section of the All Japan Association of Hard of Hearing and Late-Deafened People, was taking part as a working group member; so I was delighted, feeling “At last, our time has come!”

The “Notetaking Volunteer Development Curriculum” was announced to the whole country by the Ministry of Health and Welfare in 1999, the following year. How fortunate it was that we were handed the management of the Osaka City notetaking project at the same time.

It was less than a decade since the founding of our association, and as a voluntary group, we did not even have an office, so I set up the notetaker dispatch office in one room of my three-bedroom apartment with a computer, printer, photocopier, fax machine and so on at the ready. Purchasing equipment with the outsourcing money was not permitted, so I paid for them all out of my own pocket.

However, this did not trouble me at all because my enthusiasm for developing the notetakers for whom we wished so that they could be hearing supporters was stronger.

When we were entrusted with this project, many notetakers with whom I had become friendly in the course of my earlier activities were moved to support the training course. We began from a starting point of “absolutely nothing” needed for developing notetakers: neither knowhow nor equipment nor textbooks. However, we received ongoing support for nearly a decade from several Lions Clubs, and were able to buy an OHC, projector, and other necessary equipment.

In 2006, we received NPO certification, rented a two-storey house at very low cost, and set up an office. However, we did not have money to pay the salaries of office staff, and the dispatch office remained in my home until the end, so for 23 years, I was solely responsible for dispatching notetakers to the places where they were needed, handling over 600 cases a year. I accepted dispatch requests every day of the year, approached notetakers registered with us, coordinated with them, dispatched them, received their reports, paid their honoraria, and carried out other miscellaneous tasks.

As coordinator, my policy was to dispatch every notetaker registered with us to a job at least once a year, but this was impossible given the balance between demand and supply.

In 2011, the Ministry of Health, Labour and Welfare announced the Notetaker Development Curriculum, to replace the Notetaking Volunteer Development Curriculum. I also participated in drawing up this curriculum as a committee member. My involvement with the notetaking volunteer and subsequent notetaker curriculums meant that the notetaking project was the top priority, above my home or anything else, but I think that these were the brightest and most fulfilling 23 years of my life.

6. An agonizing decision

In April this year, the Welfare Office approached me with an unprecedentedly favourable proposal, saying “We will include wages for office staff in the budget; so please continue for three more years”. However, running courses for eight months of the year during the prolonged COVID-19 pandemic had doubled my stress, and I was physically and mentally exhausted. Various circumstances such as the ageing of our supporting members also led me to turn down the commission.

I greatly regret that I was unable to defend the system by which hard of hearing people, who most need notetakers, develop and dispatch them right until the end, but I hope with all my heart that the organisation which took over the project as a result of this agonizing decision will strengthen it and develop the work of enabling communication through notetaking even further. With this wish, I lay down my pen.