Living as Human Beings: A Report on Practical Approaches to Living in the Community Regardless of the Severity of Disability

Hiroko KOIZUMI and Mitsutoshi OYABU *

* Japan Center for Independent Living

Koizumi: Hello. Thank you for the opportunity to speak at this kind of event today. I belong to the Kyoto-based Japan Center for Independent Living (JCIL), an organization through which persons with disabilities themselves work to make the lives of persons with disabilities better.
Regarding the JCIL’s basic philosophy, JCIL was established in 1987 by the late Eichi Nagasaki who set down its “fundamental idea.” The first sentence of this text is as follows: “People are born as human beings and die as human beings. When it comes to birth and death, there is no difference between non-disabled persons and disabled persons (persons who have received a disability because of dysfunction in their mind or body). However, when it comes to disabled persons ‘living as human beings,’ the disparity in comparison to non-disabled persons is enormous.” The entire text of the “fundamental idea” is available on JCIL’s website (http://jcil.jp/eng/e-index.htm).
I have been involved with JCIL since around 1991. I lived with my parents in Fukui Prefecture until I was 18 and suffered constant bullying at school.
I have cerebral palsy, which causes difficulties in speaking as you can see. I also have deformities in my body and face, and an unpleasant appearance. I have had various thoughts and feelings in this situation. Even when I had something I wanted to say, I gave up without being able to enter the conversation. At school I was subjected to cruel words and violence.
After graduating from high school, I came to Kyoto and tried working in an ordinary workplace, but even there I felt isolated; the message I got was, “You are an unnecessary, unwanted person.” Our society exists within the context of “eugenic thought.” Those of us who have disabilities are seen as “inferior,” and “persons with disabilities are people we don’t need” – this is the kind of unspoken message I received.
When I was 28, I met a member of JCIL. They profoundly influenced my way of “living.” They helped me believe that I am a “being worthy of existence” who “can be of use to others,” and that as such a being I am “a being worth caring about.”
We want to be treated “as human beings” too. This is the idea behind what we do.
Here we will introduce JCIL’s activities.

Oyabu: I’m Mitsutoshi Oyabu from the JCIL center. Thank you for giving me the opportunity to speak at this kind of event. To briefly introduce myself, I have a disability called “spinal muscular atrophy (SMA).” I live with intensive 24-hour in-home nursing care, and work as a staff member with a disability at the JCIL, mainly engaging in activities such as peer support. I would like to introduce the JCIL’s activities and our activities with the “Project for the Future Liberation and Deinstitutionalization of Muscular Dystrophy Wards” that has already been introduced.
I’ll begin with “what JCIL values most.” I think this is the same for any independent living center, but first is “No matter what kind of disability you have, everyone should be able to live in the community, just like anyone else!” Next is “People with and without disabilities are all equal as human beings — we should recognize and respect that.” There are various barriers in our society. These barriers are both physical and mental, and persons with disabilities should raise our voices and “Break down barriers – physical, social, and emotional.” Finally, “Persons with disabilities should take the lead in activities that support others with disabilities!” With these four basic tenets driving our activities, we take on various problems on a daily basis.
This photograph shows a meeting at the JCIL office. The office is near Jyujo in Minami Ward, not far from Kyoto Station. JCIL is a caregiver dispatch office and collaborative workspace, but since its founding in 1984 its office has also been a base for activism by persons with disabilities.
We engage in various activities every day, and first among these is “peer support.” Our office provides a venue for persons with disabilities to counsel each other, and I think it is a place where they can comfortably discuss the many difficulties they face, such as utilizing independent support and nursing care and dealing with problems that arise when a caregiver is not available. The staff can consult each other, and they also visit persons with disabilities at their homes to provide counseling.
There are many independent living centers that provide “peer counseling” in the form of counseling or discussion, but here we offer “peer support” in daily life without strictly adhering to the paradigm of “counseling.”
“Community building and accessibility advocacy.” When we go out in our community, as everyone knows there are many things that are not accessible, but when we encounter an issue in the community for people using a wheelchair, we share this information on social media like Facebook and demand improvements from Kyoto City officials. The photographs may be hard to see, but looking at the one on the bottom left, recently “T” barriers have been installed in places like institutions for the elderly. These are intended to prevent vehicles like motorcycles from entering, but they also end up blocking wheelchairs. It may be possible to get through them in a small wheelchair, but the large ones we use cannot fit. Persons without disabilities may pay them no mind, but many such barriers do indeed exist, and we are working to remove them.
We have been engaged in training Kyoto City transportation bureau staff for many years. Four or five times a year we provide training to city employees such as subway drivers or attendants in the form of classes, practical guidance, and group work centered on the message “Please treat us like other passengers.” We explain things like how to handle wheelchairs, but the training is centered on persons with disabilities themselves, including things like drivers learning to understand a person with a speech-related disability when they say where they want to go.
To discuss a recent event, in 2019, Yuri Hayashi, a person with ALS, asked a doctor named Yuichi Okubo to “please euthanize me.” This led to an actual incidence of euthanasia. When this occurred, some people in our society spoke out in defense of Dr. Okubo. There were even some who said, “He killed her because she wanted to die, so his sentence should be reduced.” As persons with disabilities ourselves, this gave us a strong sense of crisis. People do indeed think, “Persons with disabilities are dispensable beings.” There was a broad debate over euthanasia regarding such issues.
Today’s theme is “to live as a human being,” and “transitioning to living in the community” is important no matter what disability one may have. Even today there are many persons with disabilities living in hospitals or institutions, but JCIL has been providing support for “community transition” for many years. I myself have been involved in the transition from Utano hospital to the local community in Kyoto. JCIL is an organization that offers support for “community transition” not only from this hospital but also many other institutions.
There is a Japan-wide project dealing with “community transition” called “Project for the Future Liberation and Deinstitutionalization of Muscular Dystrophy Wards.”
Some of you may have heard of “muscular dystrophy wards,” but for those who have not, there are wards within the National Hospital Organization where persons with muscular dystrophy and other forms of neck failure are institutionalized. There are 26 of these facilities throughout the country. It is said that they contain a total of 2000 beds. There are various hurdles facing the people in these facilities who would like to leave them and pursue a “community transition.” While the person themselves may want to live in the community, their doctor may object, saying, “I cannot let you do something so dangerous.” While the person may say “I want to transition to living in the community,” circumstances are such that doing so is not easy. It has become clear that this is not only the case in Kyoto; there is the same “difficulty in community transitioning” in Ishikawa Prefecture, Ōita Prefecture, Akita Prefecture, and all over Japan. Amid such circumstances, like-minded people who want to “make muscular dystrophy wards better known in the community” came together as a national movement and established the “Project for the Future Liberation and Deinstitutionalization of Muscular Dystrophy Wards.” JCIL has been involved in this project from the beginning, and it has been set up and expanded through discussions with all concerned.
Thus far we have engaged in a wide range of initiatives. When it comes to “promoting community transition support in each locality around the country,” the first community transition in any locality is always difficult. By sharing things like “this is how community transition was achieved in Kyoto” or “this is how community transition was achieved in Akita Prefecture” with the project as a whole, little by little “community transitioning” is becoming possible throughout Japan.
There is also something called “multiple discrimination” or “intersectionality.” On top of having a disability, there are people who also face additional pressure or discrimination because of the attribute of “being a woman.” We facilitate empowerment and information exchange between women, and every month we hold an online exchange meeting. Once a month, patients in wards and persons with disabilities living independently in the community engage in various forms of exchange and interaction. There are discussions of topics like “how can I transition to the community?” or “what is living in the community really like?”, but there are also more mundane discussions of coping strategies such as, for example, “how do you deal with the cold?” because in winter persons with muscular dystrophy struggle with lower temperatures. Patients discuss these things with each other online.
When we first launched this project, we put most of our energy into a “fact-finding survey.” We visited the bedsides of patients in the wards, conducted 58 interviews about the actual circumstances of their daily lives, and put together the results in a press release to inform the public. The patients shared various opinions, but it was clear that there was a closed-off environment within the wards, and we took action to make this fact more widely known.
We also exchanged opinions with Ministry of Health officials once or twice a year. Recently “different gender nursing care” has become an issue within the wards. For example, there are circumstances in which male staff assist female patients with bathing or toileting, and while we who are living in the community would say, “Surely this is no good,” such practices are taken for granted in the wards. Every year we submit a request to the Ministry of Health to “end unwanted different gender care as soon as possible.”
This project has succeeded in connecting people online. During COVID-19, people in the community did not meet up in person, but the flipside of this was that connecting to people in the wards became easier thanks to online [communication tools]. And thanks to not only persons with disabilities but various other people such as researchers, journalists, and other concerned parties becoming part of the network, it has become possible to proceed with “community transitioning” while sharing information and experiences no matter where you live.
I am a member of this project, but recently patients in the wards themselves have become the core of this movement. Within the “Project for the Future Liberation and Deinstitutionalization of Muscular Dystrophy Wards” there is something called the “Virtual Patients’ Association,” and through it people in the wards are advancing this movement while discussing their own daily lives and “community transitioning.” Calls for “nothing about us without us” are growing within the wards. While I spent a short period in a ward myself, I am not truly one of the people in question here. But I think that for people spending their daily lives inside the wards, becoming able to send a message to society through online tools is something that could not have happened in the past. Today, however, this is indeed being accomplished.
Right now, we are engaged in activities to advance “community transitioning,” but this is only possible because of the availability of 24-hour intensive in-home nursing care. 24-hour nursing and medical care is indispensably important to persons with disabilities, and it is because we are now living in an era in which it is possible to access this care in the community that we are pushing to steadily increase “community transitioning” going forward.
“Community transitioning” definitely seems to be increasing in other parts of the country as well. At the UN there is talk about “deinstitutionalization,” and in order to pursue “deinstitutionalization” in Japan “community transitioning” initiatives of this kind need to be further expanded throughout the country. We are also living in a new era in which people with severe disabilities living in institutions and wards can participate in projects using ICT and online [tools].
Finally, as an aim of the “Project for the Future Liberation and Deinstitutionalization of Muscular Dystrophy Wards,” various people are participating in this initiative in various ways, so rather than “as a whole,” I think each can take up initiatives with their own content. When this project started, I thought that “community transitioning” should progress and hospitals should disappear. But in my interactions with patients in the wards, some patients themselves said that wards are needed, and that while it is better for wards to exist, at present there are many oppressive limitations within them, so to begin with they would like to make the environment within the wards one in which they can live the way they want. We want to get rid of absolute restrictions and change the fact that different gender care is being carried out to ensure the safety of patients. We also need receptive communities in order to increase “community transitioning” throughout Japan. Under the current circumstances there are some communities that are not fully accepting, and to promote “community transitioning” it is important to increase community resources.
So far, I have introduced the kind of community transitioning initiatives we have been conducting. I will now hand the microphone over to Koizumi-san to continue her discussion from earlier.

Koizumi: There are many people who are “living in the community” amid the activities just discussed. But successfully establishing a life in the community is not the end [of what can be achieved]. I myself manage a nursing care dispatch office. In this role I encounter persons with various kinds of disabilities and engage in battles every day.
This office was established in 2003. At the start, the style of caregiving adopted involved persons with physical disabilities such as cerebral palsy or cervical cord injuries directing the caregiver and the caregiver waiting for instructions.
Later, situations in which “waiting for instructions” was not feasible arose, such as when caring for people with ALS, intractable illnesses (nanbyō), and mental disabilities, and collaboration with medical care [providers] and interactions with parents increased. Now we have 24-hour communication via email or messaging apps like “line.” There are persons with progressive intractable illnesses and changes caused by aging, and the person in question cannot always keep up with their own changes.
There are also cases of physical pain in which the response of the caregiver cannot keep up. There are situations in which everyone is suffering.
There are moments when people think, “Wouldn’t it be better to go back to living in a ward or institution?”
Even though there are people suffering in this way, we move forward with living in the community. This is because we are pursuing the aim of “living as a human being.”
I would like to share a final story about a woman with muscular dystrophy. She lived in a hospital until around the age of 40. In 2015 she left the hospital and began living in the community with 24-hour nursing care. The progression of her disability brought physical pain, and there was a time when she would lash out at caregivers. Several caregivers quit because they were unable to endure this. There were others at whom she became angry and said, “You cannot care for me.” At the end it was a truly severe caregiving situation.
She passed away at the age of 65. Many people came to her wake and funeral, and among them were caregivers who had quit or been dismissed from taking care of her. Many such caregivers attended her wake and shared their memories of her. One by one, each told their own story, and I felt something I cannot put into words.
I thought, “This is what it means to ‘die as a human being.’” I don’t think such stories would have been created while living in an institution or hospital. Living in the community is not easy, but nevertheless we aim to live here rather than in hospitals or institutions.
To live “as a human being” is impossible within the limited relationships of an institution or our parents’ homes. I want to keep searching for ways to connect with society.
We want to live as human beings. Please also enable us to meet our end as human beings. Thank you.