It was the second day of my visit. Must have been about seven in the morning when I got out of bed to go to the bathroom. When I opened my door, I saw there was a woman cleaning up in the kitchen adjacent to my room; one of the caregivers who takes shifts watching over Take-chan at night. 

Take-chan now lives in a share house on the third floor of the Takeshi Cultural Center. He no longer goes home to his parents’ house. Instead, he bathes, eats meals, and sleeps here, with the assistance of a caregiver from an outside group. On weekdays, he regularly visits “Ars Nova” (which is part of the Takeshi Cultural Center) on the first floor.

Take-chan is an adult now, after all. It’s good for him to live on his own, away from his parents, isn’t it? Most adults his age are off graduating from college or out hunting for a job, so it’s no surprise he wants to live apart from his parents and horse around with his friends like any young man in this society. He ought to be able to live on his own with a little help from his friends and caregivers to find out what kind of life he wants to live.

This is how Take-chan’s experimental independent life began. (Actually, it all started with a very deep discussion, which you can check out on the “Takeshi and Life Study Group” page.)

Take-chan’s life in the share house began September 2019 — nearly half a year ago already. He’s getting used to his new lifestyle and is giving it all he’s got.

Now Kubota-san (Take-chan’s mother and LET’S representative) no longer needs to look after Take-chan twenty-four seven. This means she’s free to go on business trips and the like outside of the prefecture. Looking at her blog, it seems like she has time to do a little more of the things that she wants to do. I imagine that the relief she feels is typical of any mother whose son has successfully left the nest and is making his way in the world.

In any case, that’s how I, Take-chan, and the caregiver all ended up staying on the third floor of Takebun that night. Faintly, I heard Take-chan and the caregiver speaking during the night. Take-chan had gotten up in the middle of the night and the caregiver was preparing some food for him. I think they were talking about natto rice or something like that. I should’ve just gotten up then and gone to the bathroom. Since I hadn’t, I stumbled out of bed to go now, scratching my head, and opened the door.

“Oh, excuse me,” I said to the caregiver when I saw her. ”Good morning. Name’s Komatsu. I’m spending the night here.”

“I’m sorry, did we wake you up last night? Takeshi-kun seemed like he was hungry, so I made something for him.”

“Not really. No worries. Just heading to the bathroom.”

After I got back from the bathroom, feeling bad that I hadn’t exactly been the best conversationalist, I asked her how Take-chan was last night.

I had only been planning to chat with her for a little bit and then go back to bed. I didn’t have my glasses on and my hair was a mess. We ended up talking for over an hour. Seems we both had things we wanted to say. It was a fantastic conversation and I want to write down some of the highlights now so I don’t forget them.

Caregiving Requires an Audience

“I feel like Takeshi-kun has grown up,” she told me. “I heard from the caregiver who was here in the evening that Takeshi-kun threw quite a tantrum, but he ate his meal quietly on his own. I think his determination has grown and he’s become more stable than he was when I first started working here.”

I only visit once a month or so, but I can imagine how wildly the environment around him has changed since he left his mother’s house and how he might adapt to those changes. At the same time, Take-chan isn’t the only one who’s adapted: it seems as though the caregivers have also learned how to read Take-chan, who is difficult to communicate with.

I asked her what she thought of the idea of a share house like this for people with disabilities and she said she thought they were a good thing. When I asked her why, she replied, “because they’re not shut away”.

“If I remember right, when I had just started this job a young man who seemed like a graduate student and a tall, thin man were staying here,” said the caregiver. “I think it’s just wonderful when different people like that come here.”

I realized that I knew who she was talking about. The tall, thin man must have been Takakhan-san, the artist from Osaka. I’ve forgotten the name of the graduate student, but I remember his face. None of us are specialists in this field. Whatever our reasons, people like us might stay here on the third floor for a long or short time. I was curious as to why the caregiver felt this was a good thing. 

“Caregiving is often done in such closed environments. In that kind of environment, I could be verbally or physically abusive to Takeshi-kun, and no one would know otherwise. Just like anybody, I might shout when I get stressed out. But when a variety of different people are around, there’s this sense of being seen that gives us more control over ourselves. That’s why I think it’s much better to be a caregiver in an open environment like this where many different people come to stay.”

Listening to her story, I was surprised to realize that caregiving needs an audience, too. The space of “supporter-recipient” relationships remains closed without an audience: no matter how rich the time spent there may be, it will never be accessible by the rest of society. The presence of an audience brings the “outside” to the otherwise closed-off “supporter-recipient” relationship and the outside world unconsciously enriches the support system. That’s how I understood her words. The visitors/“audience” who happened to be at the share house indirectly helped the caregiver give better support. Maybe that’s just my convenient interpretation, but that’s what her story sounded like to me.

More than one person has told me that nursing is not unlike theater acting and that being able to play a role is an important skill for any caregiver. When you act, you also have an audience. No matter how small the stage, the presence of an audience turns action into acting. In the same way, caregiving really begins when a third party, an audience, is present. This is one interpretation, anyway. 

I mean, of course caregiving is essentially composed of the two roles of “supporter” and “recipient”. However, I think opportunities to have an “audience” at the site of caregiving and to explore how the presence of an audience could improve caregiving should exist just as they do here on the share house on the third floor of Takebun.

I’m no theater expert, so maybe I’m totally off-base here. But whatever the case, her story of being a caregiver with an audience really got me worked up. My brain is busy thinking about theater and care, audiences and performers, and I’m so excited to see what I’ll learn next. But enough about that for now…

Closed-Off Relationships Between Parent and Child

As the caregiver and I continued our conversation about how it’s best to be open to the outside, the focus of the conversation shifted from the “supporter-receiver” relationship to the idea at its heart: the “parent and child” relationship. Just as an audience is necessary for supporter-receiver relationships, we thought that perhaps “parent and child” relationships need to be more open to society, too. 

Clients sometimes spend more time with caregivers than they do with their parents. As the relationship between client and caregiver is not, of course, actually a parent-child relationship, sometimes the caregivers are able to see the relationship that does exist between the client and their parent in a more objective light. Caregivers can give advice about matters that neither parent nor child may have realized they were uncomfortable with. They are the professionals when it comes to care work, nursing, and social welfare. Caregivers experience a wide variety of cases and can make suggestions from an outsider’s perspective.

But, in the end, professional caregivers exist outside of familial relationships. Our talk turned to the issue of parents rejecting caregivers’ advice. For example, parents might protest “I tried that before, but it didn’t work”, “I know my child best”, or “don’t stick your nose into my family’s problems”. Whether the parents actually voice these thoughts or not, they can still create hostile attitudes towards caregivers. Parents may be trying to protect their children but, in doing so, they can lose contact with the outside world of society and limit the potential of their children. Parents may feel extremely protective of children who have disabilities. Well, any parent can feel overprotective of their child. I know I get that way sometimes, too.

Parents naturally try to take care of their children. However, the more protective they are, the more they may isolate themselves from society. When an individual has a disability, they may require more help from outside the family and more understanding from society, but instead they are often shut away. It’s because their family feels they must protect these children that they sometimes close themselves off from society. 

We need to consider the individuals themselves. Parents cannot decide what their children really want to do. They’re overprotective. People usually think that the opinions of parents ought to be respected. We tend to think it’s a parent’s responsibility to protect their child, and we demand that of parents. So it becomes the sort of situation where no one outside the family can say anything about it.

Naturally, there are things that parents cannot understand precisely because they are parents. And, of course, the opinion of the parent is not the opinion of the child. It’s a very difficult problem.

This discussion brings to mind an interview I did with Tomofumi Tanno. Tanno-san is a young man with early onset dementia who lives in Sendai City. I did the interview for “igoku”, a media outlet that covers comprehensive care in Iwaki city. You can read the full details of the interview here or read my brief summary below.

People diagnosed with dementia often think that they ought to just stay at home because they aren’t capable of doing things. Their families may lock them away inside the home as well. Being shut away like this limits their potential, makes them lose confidence in themselves, and can make the symptoms of dementia worse. However, with the aid of things like smartphone apps and the assistance of the people around them, people with dementia can actually do many things. In trying to protect someone with dementia, whether it is because that person is your parent, or because you’re a caregiver for that person, you may be limiting the potential of that person and distancing yourself from their feelings.

The caregiver’s words made me recall the shock I’d felt upon listening to Tanno-san. Both family members and caregivers want to protect those they care for. However, when that desire to protect transforms into shutting out others and makes it difficult for others to get involved, it only ends up increasing that person’s dependency on the family or caregiver. When a person becomes dependent on family, their “place to belong” becomes the home. When a person becomes dependent on caregivers, their “place to belong” becomes the care facility. Both locations can be difficult to open up to the rest of society. 

Of course, some want the protection of these environments. But what about those who don’t? What about people who want to work or be as independent as they can? The wishes of the individual should be respected above the wishes of their family or caregivers. Establish what it is they want and then provide support towards that goal. Isn’t that what support should be? Tanno-san’s bright voice came back to me with vivid clarity.

The caregiver’s story connected with Tanno-san’s tale in my mind. Both speak to the fact that a family’s will may override the will of an individual and lead to disconnection from others. I realized just how unique this new LET’S project is because it aims to move beyond the bonds of strong parental love. The following is a quote from Kubota-san’s blog:

At the heart of this project is the involvement of “others”. How many acquaintances will get involved in the lives of these adults? I’m not talking about parents or caregivers. I’m talking about friends.

Another important aspect of this project is to not think of the parents. That also means I stop thinking about him. Don’t make decisions based on what’s convenient for the parent. Don’t think of a parent as the person who understands their child best or can be their spokesperson.

We are told that parents must prepare now so that they can protect their children with disabilities even after the parents themselves pass away. But I say we smash this idea to pieces.

Takeshi may be my child, but his life after he becomes an adult is not mine to imagine. He needs to be allowed to create his own life by coming to agreements with those around him. Even if parents try to plan out their child’s life, how could bitter old folks like us come up with anything fun, anyway? Put another way, parents need to distance themselves from their adult children’s lives for the sake of their own sanity as well. The things parents strive to avoid are precisely the kinds of experiences that make a child’s life richer and more exciting. I think it’s best to take a step or two back once in a while.

(Quoted from LET’S representative Kubota’s blog, “Yourself is good”)

Of course, Kubota-san’s blog posts make it clear that she struggles with the conflicting emotions of being both a mother and an individual. But the flip side of these conflicts and worries is the hopes she harbors for opening up this “parent-child” relationship to the outside world. I think the share house project  doesn’t just aim to increase independence for people with disabilities but that it also attempts to change the way we think about family systems and how we take these assumptions for granted.

A Parent’s Downward Spiral of Isolation

So why should parents think so much about what will happen after they die? This is a bit of a detour, but let’s consider for a minute that “isolation” may be a key factor.

I was thinking about the idea of isolation because it was something that social workers in Iwaki drew a lot of attention to when I did an interview with them for igoku. They were concerned that the more serious someone’s problem is, the more isolated they become, and that this isolation makes the person less visible and also adds to their difficulties. This is the so-called “downward spiral of isolation”.

In the interview we discussed a shelter built for the Typhoon No. 19 flood that hit Iwaki City last fall. People who ask for help may still be able to get help, but people in difficult situations tend to hesitate to ask for help. Someone in a difficult situation may think that they shouldn’t bother others or believe that there are others out there in more dangerous situations that are more deserving of aid. A mother stays in her car instead of entering the shelter because she believes the noise the child makes will annoy others in the shelter. Parents of children with disabilities usually do not receive adequate assistance in shelters. The social workers I spoke with said that the worse someone’s situation is, the more isolated and disconnected from help they become. By the time they realize this, they have already become disconnected from society and their troubles are only multiplying. Solutions take time. That’s why it’s necessary to create spaces where it’s okay to bother others and a place each of us can call home.

Despite the fact that people in difficult situations are the ones who need a wide safety net of connections to rely upon most, these are the people who tend to be pushed into institutions or hidden away by family. It’s a variant of “self-responsibility”. If you cannot take responsibility for yourself, then your family should take responsibility for you, or the company you work for should take responsibility. Japan is such a sad country.

Japan is like this because of systemized discrimination against disability. Consider kindergarten. Children in kindergarten who act out or aren’t so great at social activities tend to be regarded as a burden to teachers or to other students. They claim the student may have some developmental disorder and recommend testing, special education, or enrolling in a special kindergarten. Elementary school and junior high are no different. We live in a society that eliminates disability from the moment we are born.

The story about dementia I wrote about earlier might be similar. By that I mean that beginning in childhood we exclude people with disabilities and push them onto their families, onto professionals and welfare facilities, without recognizing that they have their own will. We simply deny what they want to do, claiming what we’re doing is for their sake, when in actuality we are really just excluding them. (This may be one reason why we struggle with issues of “diversity” in this society.)

Thus, those who are considered “healthy” grow up with little or no knowledge of the disabilities that are undoubtedly present in the world. Conversely, those who are vulnerable are made to believe that they shouldn’t bother others. Maybe it’s only natural for families who suffer for years to believe that no one else can understand their struggles when the rest of us make them feel this way in the first place.

The problem is twofold. On the one hand we have the challenges faced by an individual. In trying to provide care, family members and caregivers often cut the recipients of their care off from the outside world. On the other hand is the issue of society. Others hesitate out of concern and lack of knowledge about disabilities that have been forcibly excluded from society at large. This exclusion leads to further isolation. All parties involved need to open up and try to understand one another better.

The idea that family must be the sole source of care for children with disabilities not only limits the potential of the individual with disabilities, but also limits the place of support to the home and the home alone. When caregivers feel they are the sole source of support it also limits the potential of the individual and the place of support is limited to the care facility. In turn, the burdens on those around the individual increase. Family members and caregivers refrain from asking for help because they feel they shouldn’t bother others, and general members of society refrain from getting involved because it is difficult to do so. It’s a vicious downward spiral towards further isolation.

Pediatrician Shinichiro Kumagaya once said people tend to think that “independence” means not being dependent on others. This is not true. What being independent means is increasing your support system: increasing the number of things and people that you can depend on. I believe this is a universal truth. (Quote taken from the National University Co-operative Association website.) I think he’s very wise and his ideas are spot on.

“Healthy” people may think that they are independent, but they are actually dependent on many things. They are, in fact, dependent on so many people and things that it gives them the illusion that they don’t depend on anyone or anything else. People with disabilities, on the other hand, appear to be extremely dependent because they have fewer people and systems to depend on. This is precisely what I understand “disability” to be.

It’s the family’s job to watch over those with disabilities or put them in a care facility. It’s the experts’ job to do the thinking. While these concepts may feel legitimate at first glance, they reduce an individual’s abilities to be dependent. With less to depend on, they lose their independence and the disabled must remain disabled. At the same time, these actions deprive us of the opportunity to learn about disabilities and we remain unaware of just how dependent we actually are.

It’s the job of fishermen in Fukushima to think about the problems of Fukushima fisheries. It’s the job of the government to manage the problem. While these concepts may feel legitimate at first glance, they place the burden of Fukushima’s issues on those living in Fukushima, reducing the support net they can depend on, as well as opportunities for thought. It just puts the burden of the problem fully on the shoulders of only those who are seen as involved with or affected by the problem.

In reality, we are the ones who make parents think so much about what will happen after they die. This concern and the belief that parents must take care of children with disabilities at home does not form out of parental love, but instead out of our society that refuses to create other support systems. The family is what makes the home a place of support. Caregivers and specialists make facilities places of support. Isn’t it our job to create other places of support in our society?

Open Up to Society by Not Being Overprotective

As I thought about all of this, little by little I began to better understand why LET’S opens up their activities to society. It’s because doing so:

1. Enables disability to be visible in society and makes everyone think about disability.
2. Incorporates the outside world into closed environments such as family or caregivers.
3. Removes the “closedness” that can surround an individual and creates environments where everyone can work together.
4. Aims for a society where everyone can move forward together and anyone can find the life they want.

I recalled #1 from LET’S activities. We live in a society where people with disabilities are excluded. We grow up without knowing about disabilities. We are completely lacking in knowledge and experience and thus have no concept of the word “diversity” when it is brought up, for example, in a workplace environment. That is why LET’S tries to create spaces to meet disabilities in the most positive ways possible.

But LET’S’ gaze is also directed at #2: “family”, “caregivers”, and those “on the side” of the individual with disabilities. They want to destroy this concept of “protecting a child after the parent dies” so that both child and parent can live as they want to live. I say let’s accept that challenge. To that end, they open up their facilities and invite outsiders and amateurs like us to get involved. 

When exposed to the outside, #3, we must rethink our concepts of “family” and “involvedness”. There are, in fact, multiple discussions in the “Takeshi and Life Study Group” project that redefine “family”. The existing “family system” is no more than a variant of “self-responsibility” and may limit places to be dependent on. I find LET’S projects to rethink these terms persuasive in the extreme.

It is important to note that LET’S projects do not require anything from the individuals themselves. They raise questions to the people “outside” — family, caregivers, or outsiders like me — in order to create a society where these people can be who they want to be. Kubota-san questions herself as well, as a mother of a child who has a disability. She wonders whether she should intervene, things like that.

The over-protectiveness of a mother of a child with disabilities can become a kind of “disability” in and of itself. So, it seems to me, Kubota-san is trying to open up this issue. Why? For the sake of Take-chan’s potential. This isn’t about placing him in some protected space. By distancing herself from Take-chan, Kubota-san opens up new possibilities for Take-chan in society. The aim is for him to become more independent by increasing the number of things and people he can be dependent on. That is how he is protected.

Why is it Called “The Takeshi Cultural Center”?

Imagine that a membrane of “involvement” surrounds the individual. The thickest wall is made up of family members, particularly the parents. Then the siblings. The next layer includes caregivers, specialists, staff members of facilities, people who work in social welfare, etc. The outside layer includes people like me who have some interest in welfare, and the layer farthest from the center is composed of people who have no interest whatsoever in these matters.

From the perspective of outsiders like us, caregivers and professionals seem to belong to the “involved” group. And from the perspective of caregivers, siblings and parents seem even more involved than they are. We all hesitate to voice our opinions to people who we think are more involved than we are, and this means our voices never reach the individual themself. It may be wrong to look at these matters from the perspective of degrees of “involvement”: what really matters is what the person themself wants.

So what does Take-chan want? Since Take-chan can’t communicate well, it can be difficult for experts to ascertain what he wants. As Kubota-san once said, “I’m his mother and even I don’t know what Takeshi is thinking. Both others and I can only work together to make our best guess”. Some people may be better at imagining than others, but everyone has the ability to use their imagination. When it comes to connecting with others there’s no such thing as a “pro” or an “amateur”. Take-chan can also lean on people like us for help.

We hesitate. We protest that we’re not involved and don’t have the expertise, so we can’t help. But the truth is we just don’t know what we can do. Everyone here at LET’S has taught me that anyone can accept another person on a surprisingly deep level and that there are many things outsiders like me can do.

Maybe social issues operate the same way. The bigger an issue is, the less “outsiders” feel they can get involved. Our internet-driven society saturated by social media can easily give rise to radically opposed conflicts. Those involved in the issue think that outsiders don’t understand their suffering and isolate themselves. This isolation causes difficulties. Difficulties decrease the channels by which they can be understood. This leads to indifference and people spread rumors or just forget about the matter entirely. It’s a spiral of isolation.

LET’S always opens up their activities to society at large because they are aware of the power of being involved as well as the danger of isolation. Just think about it. Why did they name it the “Takeshi Cultural Center”? My sense is that they named it “Takeshi” as a reminder to themselves of the importance of gaining an “audience” and of staying open to society.

The Takeshi Cultural Center is a place where people with disabilities can be with a wide range of people and where they can gain a sense of themselves and of independence. It is also a place where parents like Kubota-san can slip out of the parental role society requires of them and gain a sense of themselves. We understand “disabilities” here and work together with those with disabilities to find ways to live with those disabilities. I think that it is an activity worthy of the title of “Cultural Center”.

A Diverse Audience and Cast of Performers is Best

Sounds like Takeshi-kun is getting used to living here, bit by bit. It seems like he still gets in bad moods from time to time, but maybe he made up his mind to live here no matter what, since he and his caregivers are gradually learning how to communicate. I believe this is true because that is what the caregiver herself told me.

I can still only greet Take-chan when I see him and sometimes we walk around together holding hands. I’m still getting used to the way he drools. But now I can say with more confidence that LET’S is looking for an “audience” member like me and that makes me feel more empowered to do the things we want to do.

Here, the audience doesn’t just passively sit in their seats. When we get up early in the morning we can have conversations with the actors. We can take a stroll with Oga-chan or bathe with Tsuchiya-kun. We can sing songs with Ryoga-kun or take a nap with Ota-kun. When we open up, explore, and sometimes take a strange detour or two, we create society together with LET’S. It’s not the people with individuals who get included here. It’s us.

After she made him a meal that night, the caregiver only napped for about an hour, then just waited for Take-chan to wake back up. I thought she must be exhausted, but she told me, “I’m fine. It’s not like I’m looking after him on my own every day. Since we rotate shifts so somebody new is on duty every day, this is no problem”.

It’s best to have many actors and a large, diverse audience. That’s absolutely right.

I noticed the clock said it was just about eight. I thought I must have been a bother to the caregiver, chatting with her for a whole hour, but she looked refreshed and went to wake Take-chan. I folded my futon, tidied up my room, washed my face, and begin to make my way to the first floor.

I didn’t find Take-chan on the third floor. Is he sleeping on the second floor? Is he banging rocks together on the first floor? I’ll greet him with “good morning, Take-chan!” even louder than yesterday when we meet today. With that in mind, I press the button to take the elevator to the first floor. A fresh new day is about to begin.

Translator : Koya sato, Anna schnell