– dialogue, exchange, and messages from a group of developmentally disabled people

Shizuku Sudo
Joint Representative Director, Little Bit Group of Developmentally Disabled People,
Kumamoto Prefecture

Our group’s name is the English phrase “Little Bit”. We have struggles and hardships, which we don’t need to look at, because we are a “little bit” different, but we surely also have as many joys. This was the thinking behind the name we gave our group. It is hard to see, understand, or feel empathy towards developmental disabilities. For this reason, we have carried out our activities through trial and error over many years, all the while sensing how difficult it is to send out our message.

Little Bit was set up in July 2011, and so we have reached our 11th anniversary. We are told that this is a relatively long history for a group of developmentally disabled people. We have rolled out various activities around the key concepts of “dialogue”, “exchange”, and “sending out our message”. We hold regular meetings (“Little Bit Salons”) around twice a month; while we, the developmentally disabled people, play the central role, we have continued to build a venue for dialogue with a variety of people including our families, supporters, and members of the community. Together, we think about a wide range of topics, including things that are troubling us in our daily lives and at work, and search for answers. There are many issues which have no right answer, but I think that there is great meaning in the process of these dialogues. At Little Bit, we frequently use the expression “learning about ourselves through others”, and in the course of repeated dialogue with other people, it often becomes clearer to us what kind of thoughts we have on an issue and what we want to do. This is a major part of the value which I sense in Little Bit. Sometimes, I can find an answer in the course of dialogue which I was unable to find however much I researched it by myself.

In addition to our regular meetings, we conduct “interactive training sessions in which developmentally disabled people play the central role”, our own unique style of training, in Kumamoto Prefecture and throughout the country. Unlike conventional lectures, in which the lecturer unilaterally conveys information, this training emphasizes two-way dialogue with the participants. We ensure that several developmentally disabled people take to the podium as lecturers, and run the training sessions in collaboration with supporters who have specialist knowledge (social workers). By having multiple lecturers, we dispel stereotypes that say “this is what developmental disabilities are”, and tell people that they should not lump all developmental disabilities together because their characteristics are varied. Furthermore, we do not give people any theory at all about how to provide support; we simply place great importance throughout on providing a perspective and starting-point about how to view developmental disabilities. There are no correct answers when it comes to support methods, and no limits on the ways of understanding people. For this reason, we hope that the participants will continue to take a stance of “going ahead with the process of trial and error” together with developmentally disabled people.

Another distinctive feature of Little Bit is the way in which we value horizontal partnerships and connections. We participate in the working group on employment under the Kumamoto City Disabled People’s Independent Living Support Council as the “dialogue with disabled people team”, and have worked together with supporters and local government personnel on various initiatives. Here, too, trial and error are important. We put together an online radio show, arrange visits to facilities from the standpoint of developmentally disabled people (Odekake Furatto), and produce a version of welfare leaflets from our perspective (Good! Job Notes). These also provide venues in which we can put into practice the theory of dialogue on an equal footing between diverse people. In these venues, an environment has been put in place enabling us to try again even if we make a mistake. Because of the characteristics of our disabilities, developmentally disabled people usually make the same mistakes repeatedly in society. Making mistakes causes us to feel down, and we are easily abandoned by society. However, through trial and error at the working group on employment or at Little Bit’s gatherings, many people regain the self-confidence which they had gradually lost little. Of course, things do not always go well; there are many issues. On the Little Bit management side, I feel how difficult it is to “accept diverse people” every day. If our values or way of doing things are different, it sometimes leads to criticism. Without an attitude of accepting our differences with others as differences, to a degree, and trying to learn about them even if we cannot understand them, there are times when it can be difficult to take part in the meetings. In order to accept diverse people, a certain sense of safety and security is needed in that setting. Therefore, Little Bit takes care to put rules and frameworks properly in place. At times, there are people who cannot agree to some of these rules, but the meetings start once most of the people agree to them. Because there are frameworks in place, even if trouble arises, it is possible for us to go back to the rules (the basis) and discuss things with one another again. Without rules, the reality is that it is extremely difficult to prevent trouble from arising in groups of developmentally disabled people.

Developmental disabilities are said to involve communication disabilities. However, during my involvement with developmentally disabled people over more than ten years, I have often felt that it was not the case that they could not communicate. They have many words. It is simply that there are limited opportunities for them to transmit those words, or even if they are able to, they have many experiences of their message being rejected because of the differences between the ways in which they and non-disabled people feel and perceive things. From my work every day, I feel that dialogue is possible if an environment is put in place. This may seem difficult at first glance, but it is completely possible with a “little bit” of trial and error.

At Little Bit, we intend to go on expanding the opportunities for dialogue. We intend to work on this not solely with other developmentally disabled people, but with people in various positions, including families, supporters, local government and education personnel, and members of local communities. We need to create venues in which we can transcend our different positions, rather than being divided according to them, and engage in dialogue on an equal footing. This will also lead to a reduction in prejudice and discrimination against developmentally disabled people from those in their communities. I believe that it is important to learn about developmental disability through the person themself, rather than seeing the person through their developmental disability. When the Kumamoto earthquake happened, Little Bit joined the disaster support group as a “mutual aid activity”, working together with people from various organizations to provide support. There, we carried out activities aiming at recovery together with other people affected by the disaster and supporters, irrespective of whether or not we each had a disability. In the course of this, we became accepted first and foremost as “so-and-so who’s working hard with us”, rather than being known as “so-and-so who’s developmentally disabled”, and so I feel that the way in which those around us see developmental disabilities has altered a little. Learning first about a person’s goodness, potential, and excellence can result in trusting and relying on that person. Experiences of being trusted and relied on by others in the course of mutual aid activities after the Kumamoto earthquake led developmentally disabled people to gain self-confidence.

One of our partner organizations working to send out the message about the attractive points of developmentally disabled people is Decoboco Life Design, an NPO. Decoboco Life Design collaborates with Little Bit to hold seminars and produce leaflets. At the time of the Kumamoto earthquake, they also ran safe spaces for us. I hope that we can roll out various projects together in the future, too. Developing links with diverse organizations, support agencies, and local government agencies and working in partnership on a daily basis meant that we could develop strong networks during a disaster. I felt this during my experience of the Kumamoto earthquake.

The society which I envisage is not merely a “kind” or “considerate” one. That is because these can be rather one-way on occasion. Developmentally disabled people are not always “people who are helped” or “people who are supported”. My ideal is a society in which diverse people complement what each other “can do” and make up for what each other “cannot do”, like pieces in a jigsaw puzzle. I hope that we can build a social atmosphere in which everyone does not aim for a perfect life; rather, one in which we accept and make the most of one another’s “little” mistakes.
Companions forming a circle