"Value Yourself While Living for Others: Why Ryota Kawasaki, a Rare Disease Patient 'One in 100,000,' Continues to Support Independent Living"

*Information was verified and updated on February 20, 2026.

This time, we spoke with Ryota Kawasaki, the director of "CIL Hikari" in Kagoshima Prefecture, and his wife, Hitomi, who shares their life together and has garnered much empathy from many people through her posts.

1. Who is Mr. Kawasaki?

[Interviewer (Writer): Yafuso / Interviewee: Ryota Kawasaki & Hitomi]

1-1. Struggling with the Belief that "Not Working Means Not Being Independent"

Yafuso: After graduating from a special needs school, you worked at a senior facility. Could you tell us about the process of getting the job and the situation at that time?

Kawasaki: When choosing a path, I had three options: going to university, getting a job, or continuing to live in a long-term care ward. I thought, "It's a progressive disease, and even if I go to university, I don't know what will happen, so I want to work while I can move."

I personally believed that "I have to work harder than others because I have a disability" and "working is independence," so I decided to pursue employment.

Yafuso: Did you also have a strong desire to be closer to "normal people"?

Kawasaki: I think it was quite strong. Until junior high, I hardly interacted with friends with disabilities, so I thought that after graduating high school, I would work like everyone else.

Yafuso: I see. Did your perspective on "working is independence" change over time?

Kawasaki: Yes, it did. At that time, my physical condition was the same as it is now, and I needed almost full assistance, but I could only use helper support for about four hours a day.

I lived in an apartment on the same premises as the facility where I worked, and I was allowed to call a senior staff member on night duty at another facility if needed, but I was hesitant to ask for help.

Yafuso: So, you were living a life where you refrained from asking for necessary assistance and endured physical discomfort while continuing to work. What triggered the change in your mindset?

Kawasaki: There was a time when I had an accident in the bathroom. From that moment, I started to think, "What am I doing?" Looking back, it was a turning point in reconsidering how I work. It was a discomfort with working like a normal person.

When I resigned from the facility, I was told, "You can work shorter hours," which I now realize was appropriate reasonable accommodation. But at the time, when I was 19-20 years old, I could only perceive it as "being treated specially," so I chose to resign.

1-2. Becoming the Director of "CIL Hikari" and Personal Transformation

Yafuso: Could you tell us how you started working at "CIL Hikari" and what led you to become the director?

Kawasaki: In high school, I participated in a lodging experience conducted by the "NPO Independent Living Center Tekuteku" (hereafter, Tekuteku). It was a program to experience what independent living is like.

After resigning from my previous job, I returned to my parents' home and started preparing for independent living while reconnecting with the staff at Tekuteku.

A year later, I was able to live independently, and with time on my hands, I started visiting the Tekuteku office, helping with events, and participating in training sessions like a volunteer.

After about 5-6 years of such days, I started working as a staff member at Tekuteku and got involved in management. About three years later, the then-representative passed away, and that was the trigger for me to become the representative.

Yafuso: I see. It was a position you took on after building a trusting relationship with Tekuteku. Did becoming the director bring any changes to yourself?

Kawasaki: Compared to ordinary work, the responsibility is heavier. Also, if I don't take the initiative to improve things, days will pass without anything happening, and it will end up in a negative way.

Yafuso: Do you also handle consultations from individuals?

Kawasaki: Yes, I do. I meet with people who wish to live independently, think together about the process to independent living, and conduct lodging experiences. That's the kind of work I do.

Yafuso: There may be many people who want to be independent but don't know how to proceed.

Kawasaki: There are people who don't know how to proceed, so we think together from small questions.

It's easy to convey from our side, but at "CIL Hikari," we believe it's important for the individuals themselves to think about what independent living is and understand it, so we value thinking together.

Yafuso: Some might misunderstand and think that "everything will be done for them if they consult." It's a reminder that this is not the case.

Kawasaki: That's right. Even if you start living alone, not everything is easy or can be done effortlessly.

Therefore, rather than treating them as "customers" receiving services, we value engaging in a way that allows us to grow together.

1-3. Society and Challenges Seen from the Perspective of Independent Living Support

Yafuso: How do you perceive societal changes as someone who observes independent living support on the ground?

Kawasaki: As a societal atmosphere, promoting independent living for people with disabilities is no longer seen as something special.

When someone says they want to live independently, they are rarely stopped anymore. I think that's a good thing.

However, on the other hand, I think there are parts where individuals are deprived of gaining life experiences.

It's like they are treated as entities without autonomy even when they are out in society.

For example, helpers do everything for them.

Even though they live in an apartment, they have to sleep at designated times, can't choose their meals, etc.

Without a "foundation of rights awareness" that allows individuals to think this is strange, they might think, "It's better than being in a facility."

While I don't deny that, I believe that to become more human and be the main actor in one's own life, those around them must respect the individual's autonomy.

Yafuso: I see. Supporters need to engage in ways that draw out the individual's autonomous actions.

Kawasaki: Yes, that's right. It would be great if every organization could do that more proactively.

In the first place, individuals haven't had the experience of "deciding," so support that takes time from the individuals themselves is important.

2. The Important Family Supporting Mr. Kawasaki

2-1. The Journey to Marriage and Inner Struggles

Yafuso: Did you face any struggles when you two decided to get married?

Hitomi: Initially, I might have struggled more with the presence of a caregiver always being by my husband's side. "How can we ensure privacy?" That was probably the topic we discussed the most.

I knew it would be physically challenging for me to live while providing care, so we talked extensively about having a married life while continuing the "24-hour caregiver-assisted independent living" that my husband had been doing. That's where our marriage differs from a typical one.

Yafuso: How do you balance life with the caregiver included?

Hitomi: As part of our marriage preparations, we chose a house layout with a room where the helper can wait, so they can assist when needed.

We ask for help when necessary, and during meals, for example, they stay in the waiting room.

Yafuso: I see. It must be nerve-wracking to eat with someone other than family present, even if they're a helper.

Hitomi: At first, having someone other than family in the house felt burdensome. New helpers come in, so there's turnover.

But now, I find living with various people interesting.

Of course, it's not like I don't feel any pressure, but I've become comfortable enough to eat together. I think we've found a good balance.

2-2. What Are the Innovations in Married Life?

Yafuso: Hitomi, you've accepted many things despite your struggles...!

Hitomi: We've always talked things out whenever we faced difficulties, and that's why we're here now.

We probably have more situations where we need to discuss things than typical couples.

Whether or not there's a disability, I think it's possible to live thinking, "I just need to endure it."

But for us, we couldn't proceed without discussing things, and I think that was a good thing.

No matter what happens in the future, we have a foundation of resolving things through discussion, so I believe we can continue doing that.

Yafuso: That's wonderful! How about you, Mr. Kawasaki?

Kawasaki: I knew I would live with caregiver support, and I didn't want my wife to be a caregiver, so there were challenges.

When we took a week off from having a caregiver, I fell ill. It was tough for both of us, and we gradually lost our composure.

So, in reality, there are situations where we need a caregiver. I think it's necessary for us to be equals.

Instead of being annoyed by having someone around, we've continued to think together about "how can we solve this?" Thanks to that, we have the life we have now. Without that, we might have fallen apart.

Hitomi: Indeed, if I had continued to be involved as a caregiver, we wouldn't have had the atmosphere of being a "couple." We wouldn't have been able to stay lovey-dovey. (laughs)

2-3. The Happiness of Spending Time with Family

Yafuso: Could you share any strategies you have for living with your child?

Kawasaki: I do what I can, like being a playmate or picking him up and dropping him off. I want to do what I can.

Hitomi: It's a great help. Since we're a stepfamily, my son and husband have only been together for about 4-5 years, but I tell my son, "Ask Ryota-kun for help in such situations" and "We can live because Ryota-kun is working," to make him aware of having a 'father'.

Yafuso: What moments make you feel happy as a family?

Kawasaki: Definitely when the three of us go out together. It feels special just doing that, and it's fun.

Hitomi: Usually, we have a 24-hour caregiver, but for my husband, the caregiver is like a junior or colleague, so I think he doesn't really get to relax.

Once a month, we make time to spend just the three of us. It's really nice during those times. It's like, "Yay!" (laughs)

Yafuso: It sounds like you have your own family vibe when it's just the three of you. (laughs)

Kawasaki & Hitomi: We do. (laughs)

2-4. Message to Those Considering Marriage