Carer Action Network Association
The Carers Action Network Association (CAN) aims to "create a society in which family members themselves do not have to bear the entire burden of caring for their family members in need." The association aims to create a place for carers, provide individual consultations, train personnel for school officials and supporters, create videos, give lectures and other educational activities, and make policy recommendations to the national government. We spoke with Kyoko Mochida, the representative director.
Please tell us about your career and how you started the organization.
I worked in information security for a foreign securities company for nearly 30 years. Since I was in elementary school, I have been caring for my brother who suffered from Down syndrome all his life, as well as supporting our mentally unstable mother with her emotions. Since I was 17 years old, I have been dissatisfied with the lack of family support services, even though welfare services for the disabled are improving.
When I was in my 30s, I was reading an internet-related magazine and there was an article that the "Down Syndrome Parents Association" had set up a website. I wanted to meet a “sister” who was like me. When I reached out to her, she said, "Because it is a parents' association, there is no connection between brothers and sisters. Why don't you create your own website?" So, I made my own website and gathered a group of more than 80 "siblings" from around the country, and they began sharing their feelings through a mailing list.
When I was about 37, I took care of my father, and in my forties, I took care of both my mother's home care and my brother's daily life, and I managed to balance work and care for him. I also supported my family financially, so I stopped talking with my siblings for about 10 years. Later, when I got married and got a partner, I finally realized that I didn't have to work hard on my own.
As well as being a sibling, I have also supported my parents’ emotion. I realized as an adult that I had been subjected to domestic violence and psychological abuse. As a result, I felt that I wasn't good enough to talk about myself from “siblings” perspective.
In 2013, I first learned about the term "carer" through an online search and went to the U.K. to see a young carer support and participate in the program. I was thus able to recognize that I was a carer. Carer means "a person who cares for the family without charge," so siblings and children are included. The word "carer" has an image of embracing diverse families, and we established the "Carer Action Network" (commonly known as CAN) with the idea that "carers can act and connect by themselves."
Meeting of siblings and caregivers (networking event)
What was the most difficult or good thing about launching?
(After a long silence) I can't remember anything that was difficult. Since I was in elementary school, I was worried that my mother, who had an obsession with death, would commit suicide with her son (my brother). Every day when I came home from school, I felt relieved that they were both alive, so I couldn't afford to think that I was in a difficult situation. I had to keep my emotions in check and take care of things before I could make it through the day, so even now, I don't get upset when I'm in a difficult situation, and if things don't work out, I think first about how to make it work. So maybe they're not aware that it's going to be difficult even if it's going to be difficult.
Also, if you are taking care of your family, it may be a habit not to think that it is difficult, because if you are not always "cheerful," the whole family will be pulled in a negative direction. When I was depressed, my brother would make me laugh and be a source of energy. My brother is said to be handicapped, but the unconditional love he gives is immense - I feel that I have been helped by that love for a long time. Even now, even if the care experience is tremendous from the viewpoint of others, they unconsciously speak with a bright smile.
Other than that, all the carers I have met at CAN are people with a positive attitudes and positive energy, so I think they naturally have a positive mindset. By being positive, things move in the direction you want them to go, and the synergy makes everyone positive. Being able to connect with so many of you is one of the great things about starting this organization.
Recently, the term "young carer" has been heard a lot, and policy discussions to improve the situation of carers seem to be active. Is there any change in the situation surrounding carers?
It is good that the term "young carer" has been recognized by society, but we are raising alarm about the negative image that young carers are "poor children" who live in needy families and cannot go to school because they are caring for their families. The need to become a carer is something that can happen to any family, regardless of their standard of living, and it's not just limited to care. Family care may continue after age 18, and the problem will not be solved if the child stops caring for the family.
In my conversations with carers spanning from teenagers to those in their sixties, I have found that the situation has not changed in the past and in the present, where family problems are left to the family alone. During all this, children and welfare supporters have gradually listened to their families and become concerned about their children's existence. I think that's a very good trend.
Junior and senior high school young carers' house party
What is the use of FIT donations?
We intend to use the donations we received from FIT for two purposes. The first is to revise the official website of CAN. The other is video production. Following the short film "Hina’s world" (now available for free on YouTube) featuring a sibling, we are planning to produce an omnibus version of the film. We asked several young carers to write about their own experiences of care. I wrote the script based on those. We are planning various other collaborations, so please look forward to it.
What can we do?
As we reach the 10-year anniversary of the introduction of the term "young carer" from England to Japan, I want everyone to think about how they would feel if they were to support their family. To help you imagine such a carer's life, we will create an omnibus video, so if you are interested in participating as a free extra, please contact us.
What are your prospects?
We want to create a database of the voices of carers of different ages. By creating a database, caregivers can obtain the information they want at the time they need it, and they can easily communicate their opinions to the public.
Finally, please send a message to anyone reading this article.
Carers who have supported their families have been working hard since they were young. I would like to shed light on their hidden and unseen efforts in various ways. A lot of carers have some kind of loneliness, so if you all support them, it gives them strength to live. From now on, I hope that you will support the carers by changing your perspective from "I feel sorry for you, let's save you" to "Let's strive for growth together."
Representative Mochida-san(top left) and FIT2023 Organising Committee members(clockwise from top right) Onishi-san, Omote-san and Yamazaki-san