Masaru Torigoe

Born in 1988. A muscular dystrophy activist who has Becker muscular dystrophy and uses a wheelchair. While working at a company, he carries out various activities to empower people with intractable diseases or disabilities, in particular, through challenges such as disseminating information about intractable diseases and disability on his “Torisuma” YouTube channel, or planning and holding online discussions for people with intractable diseases and their families (a total of over 130 so far).

Hello. My name is Tori-chan, and I’m a muscular dystrophy activist. It might seem a sudden question, but have you ever heard of wheelchair paragliding? I first experienced it five years ago, and it prompted major changes in me. In October last year, I experienced my second wheelchair paraglider flight, and was able to broadcast about it on YouTube. I would like to take this opportunity to write about myself, both before and after taking on this challenge.

If you ask whether I was always positive and accepted my illness, the answer is definitely not. I was diagnosed with Becker muscular dystrophy (hereinafter, “BMD”), a disease which causes my muscle strength to decline gradually, when I was around 12. Over the following 20 years or so, I was unable to reveal this to those around me, and hid it in my daily life. For this reason, I was psychologically alone and felt conflicted, unable somehow to have confidence in myself. Looking back on it now, I think that I was being forced into the limited range of choices imposed by illness, such as “I need to do X because I’m ill” or “I can’t do Y because I’m ill”, and had given up on or run away from various things, blaming this on my illness. For this reason, I passed my days in a way that could not quite be called “happy”, although I led a reasonably full life.

Around five years ago, however, I became able to reveal to those around me that I had muscular dystrophy. What prompted this was questioning myself about whether hiding my BMD and being constantly on guard was really what I wanted for the rest of my life. I went on to focus on thinking about how I wanted to live from then on. In the midst of this, I was able to meet people who shone twice as brightly as others despite having intractable diseases or disabilities, and I gradually came to think that I might be able to do something, too, and that there might be a meaning in my having been born with muscular dystrophy. At that time, I also made my first attempt at wheelchair paragliding, and the sense of concrete action and achievement which I gained were also a major experience for me. From then on, little by little, I became able at last to live in my own present, which does not belong to anyone else.

After this, I started disseminating information about intractable diseases and disability on my “Torisuma” YouTube channel, as well as connecting with the community of people with intractable diseases and planning and holding discussion groups. I was also invited to do various different things, expanding the scope of my activities. I took part in the Tokyo 2020 Paralympics as one of the torchbearers, and have also had several opportunities to appear on the television and in other media. At first, I threw myself into these activities with a sense of mission to empower my companions with intractable diseases or disabilities, but before I knew it, they had become my own life work and reason for living, so that I am fulfilled every day

What I noticed then is that I love the sky. This is perhaps because it is a symbol of freedom, the object of a challenge, and a place in which I feel alive. However, the urge to do it which wells up from inside of me is even more important than these things. I will attempt a solo wheelchair paraglider flight. In order to do so, I am even prepared to move to Yamagata Prefecture.

I make the decisions about my life! I want to prioritize this as I continue to live my life, which no-one else has ever lived.

Please see my YouTube channel, “Torisuma – information channel for people with disabilities or intractable diseases”
https://www.youtube.com/@torisuma25
[in Japanese]

Edited and published by the Japanese Society for Rehabilitation of Persons with Disabilities. Published on June 25th, 2023.