About my disability​

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　I was born with an incurable disease, congenital osteogenesis imperfecta.

It's an incurable disease that affects 1 in 30,000 people. My bone tissue is weak and prone to breaking. I've had many surgeries, and now I'm 135 centimeters tall, 70 kg, and 50 kg on my face (lol).

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　Congenital osteogenesis imperfecta is an inherited disorder, and my two older brother, who is deputy representative at the CIL Muchu, have the same disorder, and of my three siblings, only the eldest is not disabled and is a painter. My dad was a carpenter and drank all the time. When my mom was pregnant with me, my dad was drinking and said, " I don't want any more children. Because this disease will be passed on to the next one born. "

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A life that started out negative.

 

　When people are born, there's a message from their parents that is often said, “Thank you for being born, baby!” But in my case, it started with a negative message: “You didn't have to be born.”

 

　In today's Japan, many people, regardless of whether they have a disability or not, are having a hard time living. All people with disabilities are born with hard experience. As you can see from my own personal history, I started out with a life of denial before I was born.

 

The denial of existence has robbed me of my ability to live.

 

　When I was born with a disability, my mom raised me for a while. Yes, my mother was happy to have me, but she was really tired of raising me. When I was in the sixth grade of the elementary school, I came home to find that my mom was gone. I thought to myself, as a child, that she would come home at night, but my dad said, “She left you two and went away.” After that, she never came home.

 

　Ironically, I was raised by my dad, who had told me not to have a baby.

　When I was born, I was denied my existence and my dad took away a lot of power from me. The power was an inherent part of human nature, the ability to live. Perhaps that is why I have a huge complex, and I have had a hard time accepting that I am disabled.

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　The reason I told you my personal history in this way is because I wanted you to know the starting point of the independent living movement.

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