Serina Shikakubo

Born in 1994, and lives in Tokyo. She has spinal muscular atrophy (SMA), and uses a ventilator. After graduating from Tokyo Metropolitan Edogawa Special Needs School (now Tokyo Metropolitan Shikamoto Gakuen), she took a training course to develop IT technicians run by Tokyo Colony, studying from home. She obtained an IT passport, a national qualification. Since 2018, she has been responsible for a part of the production of DAISY (Digital Accessible Information System) books, working as a freelancer.

I have an incurable condition called spinal muscular atrophy. I use a ventilator, and usually spend my days in bed.

I entered Edogawa Special Needs School, going to school once a week and having lessons at home twice a week throughout my school life. When I was in elementary school, I held a pencil and wrote characters myself, but this became increasingly difficult, and I used a computer for my classes from junior high school. I use an item called a one-key mouse, in which all computer operations can be done with one finger. I have learned all the basics of computer operation, and it is no exaggeration to say that it has now become a part of my body.

When I thought about my path after graduation, I strongly felt that I wanted to be useful to my family, even if only in a small way, and so I aspired to work from home. Hearing my wish, the teacher in charge of careers counselling introduced Tokyo Colony’s training course to develop IT technicians, the studying for which is done at home. On this course, you can acquire various types of knowledge over two years, with the aim of finding a job. You basically study at home, and attend in-person classes a few times a year. I felt that I did not yet have enough knowledge or business manners to start work, and so I immediately decided to take the course.

During the two years, I learned about IT, programming, business manners, and so on. When there was something that I did not understand while studying, as well as asking by mail, I received direct instruction from the teacher, who visited by home twice a month. There was a lot of difficult content, and there were times when I felt like giving up, but the teacher taught me patiently, and so I was able to move forward. In the business manners classes, I learned how to write mails, and I am able to put the skills I acquired to use in my work.

After finishing the course, I decided to attempt the examination for an IT passport, a national qualification, in order to demonstrate my core IT abilities. There were 100 questions in total, and I was granted various accommodations, including an amanuensis, extra time, and an enlarged question paper. I failed my first attempt, but I was able to pass the examination the second time. I was so happy that my efforts had borne fruit that my heart was full. It made me more self-confident, and I was truly glad that I had worked to come that far.

I also met new friends after starting the course. They always listen to me when I am in trouble. We have gone to karaoke and Tokyo Disneyland together, and I am very happy to have such fun memories with them. They are very important to me.

I am now working as a freelancer, and am responsible for a part of the production of DAISY (Digital Accessible Information System) books. DAISY books were developed for people who have difficulty reading written text. I carry out detailed corrections to the intonation of passages which have been read aloud, and edit the phonetic reading given above the text. I think about the meanings of the words while correcting the intonation, so it is quite time-consuming, but it is a very rewarding task. I want people who have difficulty in reading text to know how enjoyable the stories are. I am truly grateful that I encountered this job.

Even if there are things that I cannot do, I always try to think about how to become able to do them, rather than giving up. Even if you have a disability, you do not need to give up on your dreams. It is up to you to decide your potential, not to those around you. If you find a path that you want to follow, I think that you should aim for your goal one step at a time, at your own pace, even if you take a few detours. I hope that I will continue to have ambition and, remaining grateful to my family, who always support me, live positively and with a smile.