Kana Aikou
YAH!DO Miyazaki Independence Support Center for Individuals with Disabilities

About My Disability

I have congenital myopathy and have been living with a ventilator 24 hours a day since I was 5 months old. I mainly have muscle weakness, which prevents me from breathing on my own. The medical care I need is suctioning, gastrostomy tube feeding, and respiratory management. Although I need a lot of assistance on a daily basis, there are also many things I can do on my own, so I enjoy living while communicating with the people around me.

My Current Situation and the Things I Wish to Challenge in 2023

Currently, I attend the YAH!DO Miyazaki Independence Support Center for Individuals with Disabilities four days a week. There, I use computers to work and give lectures at nursing colleges with my elders.Additionally, twice a month, I practice staying overnight in the accommodation trial room at YAH!DO Miyazaki. There, I cook and talk with the caregivers about various topics and occasionally go for evening walks. It's very enjoyable because I never do these kinds of things at night at home. One thing I want to try in the future is to travel without my mother accompanying me. I want to go to Tokyo Disneyland.

Preparations for Achieving My Goals

My dream is to live alone. Currently, I live with my family, and my mother mostly takes care of me. However, I think that as my mother gets older, it will become physically difficult for her to provide assistance. Also, I want to have the freedom to live on my own.There are two things I am doing to prepare for living alone.The first is learning how to communicate with caregivers. Initially, I worried about how to communicate well with them. Even now, I still have concerns about communication, but I want to continue expressing my feelings clearly. The second is learning to cook. When I practice staying overnight in the accommodation trial room twice a month, I cook meals. I have made dishes like cheese fondue, takoyaki*1, and okonomiyaki*2. It makes me happy when the caregivers say that the food is delicious. I want to continue learning and cooking various dishes. Since I live in Miyazaki, I definitely want to learn how to make "chicken nanban*3."

Message to Everyone

The message I want to convey is that anyone can live alone. At first, I was anxious about living alone, but I was able to feel at ease with my caregivers taking care of my various needs. For example, I no longer have to worry about life-threatening things such as suction and infusion, as well as other necessities of life.
There are many more enjoyable things in my life than sources of anxiety. Staying up late, doing things I like whenever I want, and experiencing things that can only be done when living alone.
There is only one life for everyone, so I want everyone to enjoy doing what they love to the fullest. I hope that by showing children the joy I'm experiencing, I can be a role model for them.
I would like to see a society where all people, regardless of disability, can live happily and with consideration for each other. To achieve that, I believe it is important to raise awareness, so I hope to actively go out, challenge various things, and participate in them.

Takoyaki*1 is a round shaped snack of chopped octopus placed in a batter of flour, eggs, and dashi soup stock and cooked on a special griddle.
Okonomiyaki*2 is a Japanese-style pancake made from eggs, flour, and water with lots of toppings you want, like many kinds of seafood, meat, and cheese.
Chicken nanban*3 is a local cuisine originally created in Miyazaki prefecture, Japan.
It’s fried chicken with sweet vinegar and tartar sauce.