Mao Sagara

The author is affected by many issues including developmental disability, fibromyalgia, depression, obsessive-compulsive disorder, anorexia, and more. Born in 1983, she is a resident of Miyazaki City (in reality, she pops up all over the country). Her teens and twenties were consumed by anorexia; she began her activism as a person with a developmental disability around age 30, and established the NPO Decoboco (“uneven”) Life Design in 2015, together with fellow members of a group for people with developmental disabilities. While working to support the victims of the Kumamoto earthquakes which occurred in April 2016, she was diagnosed with fibromyalgia. Her days are currently spent troubled by pain and the cost of medicines.  

Ever since becoming aware of myself, I have felt an inescapable sense of unease about something. When I was in preschool, I was woken by dreams of being scolded by the teachers and, for some reason, I was terrified wondering what I would do when I reached elementary school and was forced to do a handstand, which I could not do. When I was in first grade, I had a “Letter drill notebook” for hiragana practice at home; I cried every day, saying “I still can’t write neatly!”, and wrote then erased, wrote then erased the letters for hours and hours, until the notebook tore. For me, “the creatures called teachers” were absolute beings – no matter how many times my parents told me that it was fine, I was unable to escape the compulsive idea that I had to do things perfectly in order to avoid the teachers’ anger.

Throughout the three years of junior high school, I was determined to be in first place, weeping and crying with anxiety for more than a month before the regular exams. This was even though my parents told me that I did not have to study, and it was not that anyone said anything to me at school, either. Looking back now, it is a mystery to me. I became anorexic in the second grade of senior high school, and when I let slip that I wanted to be admitted to the department of psychosomatic medicine which I attended as an outpatient, I was shocked when the doctor said to me “If you are admitted, you will have a reason not to go to school, right?”. I was admitted to a university hospital, quit senior high school, and was diagnosed with a developmental disorder.

During my twenties, which I spent with anorexia, I repeatedly entered and then quit school, began living alone and then gave up, started parttime jobs and then left them. My obsessive-compulsive disorder also worsened, and I became unable to do everyday tasks. My weight suddenly fell to 24 kilograms, and I nearly died. While a doctor was listening to me talk on and on in the middle of the night in the hospital, I suddenly felt something fall into place with a thump. After that, I dramatically healed... no, I still had anorexia like before, but I gradually came to understand that I could not die, that the only thing to do was to go on living.

Just before I turned 30, I had more or less returned to my normal weight, and began to go to a group of people with developmental disabilities. A few years later, I set up the NPO Decoboco Life Design together with my companions. When I say this, people sometimes tell me “That’s great!”, but in fact this is completely wrong: every day is a succession of struggles and troubles. The most troublesome thing of all is that I, who am not only stubborn but also talkative, mercilessly drive my friends to tears then, taking advantage of the fact that they are all kind, am still working with them all today as though nothing had happened.

People tend to think that those with developmental disabilities are troublesome, but we are probably even more troublesome and more complicated than they imagine. However, we definitely ought to be interesting. We perhaps have to live lives which are microcosms of the fundamental human condition, for better or for worse. At Decoboco Life Design, in order to communicate the unique and attractive sensibilities of people with developmental disorders, we hold study sessions and talks and put together awareness-raising booklets written from our perspective, using the work of the group of people with developmental disorders as a base. Through these activities, I feel that continuing to face this troublesome nature resolutely is a truly interesting undertaking. It can also be incredibly exhausting...

There are sometimes members of the group of people with developmental disabilities who exclaim “I want to be normal!”. If there were actually any such thing as normal, I, too, would have liked to live a normal, successful life. I thought that this was going to university, getting a job, and getting married. By now, these are all things I have had to give up on or let go of. I also have fibromyalgia, and I am no longer able to move my body freely (but I am contrary so, although I say this, I might go to university, get a job, get married, and get divorced someday...)

I still cannot do a handstand; whatever I do, it does not turn out well; each time I cause a problem, I sink down, and a fog of anxiety envelops me; nevertheless, I am perhaps fairly happy (?). I think that this is because I have the world which has spread out thanks to the group of people with developmental disabilities, and my lovable, troublesome friends there. I also have an environment in which I can trust that my friends will accept me, with all my troublesome aspects.