My name is Daisuke Kasayanagi. I work for an NPO called DPI Japan, an organization that is dedicated to protect the rights of people with disabilities and to make policy recommendations. Our organization aims to “create an inclusive society where all individuals, regardless of disability, can live, learn, work and grow together with hope and dignity”. My main roles include fundraising, public relations, marketing, event management and public speaking.

I was born with Charcot-Marie-Tooth disease, a progressive disease that causes muscle degeneration. When I was in the second grade of elementary school, I was told by my doctor that I would eventually lose the ability to walk in the future. My parents encouraged me to visit hospitals all over the country and undergo rehabilitation in order to slow down the disease’s progression as much as possible. I also worked hard on my rehabilitation every day to meet their expectations, but despite my effort, I was unable to stop the disease from advancing.

I still vividly recall the incident when I suddenly couldn’t run while playing in a park when I was in the second year of junior high school. Also, during a field trip in the second year of high school, I was unable to climb the stairs without a handrail, and there were many moments when I was confronted with the progression of my disability. At the time, I saw my disability as something to overcome or get rid of. I was driven by a strong desire to avoid being a burden to others around me as a healthy person.

By the time I entered university, I had difficulty walking long distances, and I was forced to choose a school within commuting distance close to home. Despite this limitation, I gradually built up my confidence by actively participating in part-time work as a tutor, volunteer activities, and club activities. However, the conflict of not being able to accept my disability did not disappear, and there was a time when I lost sight of my own self worth.

After graduating from university, I worked at a regular company, but faced challenges due to the progression of my disability. My body was gradually becoming less mobile, and I asked myself every day whether this was really how I wanted to be. Then one day, when I realized that I was close to the limit of being able to walk unaided and that I would inevitably have to use a wheelchair, my whole outlook on life was shaken. Until then, my goal had been to avoid using a wheelchair, so accepting this was like losing my very identity. At the same time, however, I also began to think, “I have this condition, why not use it to make a difference.”

After the shift in perspective, I visited various organizations that support people with disabilities and met many people, and I joined my current workplace. At that time I also started using a wheelchair, and to my surprise the pain I had experienced before completely disappeared. The days when I had difficulty walking and didn’t want to go out of the house were dramatically improved by using a wheelchair. It became easier to move around, and I no longer felt anxious about inconveniencing others.

What was even more significant was that I was able to accept my identity as a person with a disability. I was freed from the conflict of having to be a healthy person, and I developed a strong desire to use my experiences to contribute to society.

One day, when I was out and about, I saw myself in a wheelchair reflected in a window, and I thought, “I look good in a wheelchair!”. That was a turning point for me. Since then, I have felt that as my disability progressed, my life has only improved. I have been able to convey a positive attitude to those around me by talking about my experiences with disability. Hearing that my story has given people courage has, in turn, strengthened me.

I am currently living a fulfilling life. While pursuing what I can do as a person with disability, I continue to work towards a society where everyone can live with dignity.

– Having a disability has given you the privilege of enriching the lives of others. Has your career changed in any way?

After graduating from university, I worked for a consulting firm and an IT company. At the time, from the perspective of a person with a disability, I questioned the way for-profit companies generally operate, which is to increase sales, reduce costs, and maximize profits.

In this model, people with disabilities are perceived as a “cost”.

Compared to the past, employment of people with disabilities in Japan has developed considerably, but in order to accept people with disabilities, it is necessary to improve things like working hours and the work environment, and this costs money. As a result, there is a lot of fake employment of people with disabilities going on. I think that the mindset of business owners is still negative about accepting people with disabilities, and true inclusion has not been achieved.

I’ve always thought that there might be a new way of thinking about capitalism that fundamentally changes the formula created by capitalism today, which is “increase sales, reduce costs, and maximize profits”, and incorporate ethical elements such as supporting people with disabilities.

After working for a while in the private sector, I changed jobs to DPI Japan, which was promoting exactly what I wanted to do, and started my current job. However, in Japan, activities to protect the rights of people with disabilities and to make policy proposals don’t get much attention, and the financial situation has always been difficult, so I felt there were big barriers to seeking to expand these activities.

– Shizenkan is also exploring the future of capitalism by launching a project.

Yes, this year I happened to hear about Shizenkan from Vice President Uo. I was really attracted by the fact that they were seriously considering rethinking capitalism in their classes and offering a curriculum that transcends the boundaries between business and society. I believed that Shizenkan would be the place where I could think about a new model of capitalism that would reconcile business and ethics, which had previously been considered conflicting. As a result, I decided to apply to study here.

– You’ve only been here for about four months, but what have you learned or realized so far?

The activities of the international NGO Greenpeace are well known for being radical, but when we were asked in class whether we supported or opposed their activities, some people had negative opinions. For me, I thought their activities were “very beneficial for society today”, but I was surprised to realize that others felt the exact opposite.

At that moment, I realized that until then I had been working in the field of supporting people with disabilities, and had been surrounded by people who shared similar values. It was a moment when I recognized the obvious fact that there are diverse communities with different values in society, and that they coexist.

What is wonderful about Shizenkan is that it provides an environment where you can engage in discussions with classmates who hold different values, while respecting each other’s values.

In class, I was taught that “we need to build a new system using the limited resources available in a society where different values exist”. My perspective suddenly broadened.

– Could you tell us about your ambitions for the next step?

Last year, I received a grant from the Duskin AINOWA Foundation, and over the course of approximately one year, I conducted research on the fundraising activities of organizations for people with disabilities in the United States.

What struck me most during my research was the high level of understanding of support for people with disabilities shown by ordinary companies in the United States, and the well-developed policies in place. In Japan, large-scale support from companies for events to support people with disabilities is rare. Even when policy proposals are made, they are often misunderstood as “selfishness on the part of people with disabilities”.

On the other hand, the US government has established an organization to protect the rights of people with disabilities, and support activities are steadily expanding at the grassroots level. There is also a lot of cooperation between companies and disability support groups, with large donations being made to organizations. I was made aware of the difficult situation faced by disability groups in Japan.

It is difficult to quickly adopt foreign cultures and policies, but I think that a cooperative relationship between companies and disability support groups is also achievable in Japan. At the moment, there is a big gap between the two sectors in Japan, but I would like to bridge that gap through my efforts.

At Shizenkan, I would like to discover what the disability sector can do to help create a new vision of capitalism through discussions with people whose values differ from my own, and to think about concrete activities. I also hope to gain knowledge that will enable me to contribute to creating a society where children and parents with disabilities like mine can live with peace of mind.

(December 10, 2024)