Ryo Orita

Residing in Osaka Prefecture, Japan, I was born in 1989. Due to Type 1 Spinal Muscular Atrophy, I have been a user of a ventilator since I was six months old. After going to a local daycare center, I went on to elementary, junior high, and high school, and currently, I live an independent life with the support of two caregivers. I have a tracheostomy tube and receive nutrition through a gastric tube. Although I cannot swallow, I love the sensation of placing food on my tongue and savoring it. I have a particular fondness for shrimp and peaches.

I was born with weak muscles and was in and out of the hospital repeatedly. When I was six months old, I inadvertently mis-swallowed some milk which led to the need for a ventilator. At the time, my parents thought that the ventilator would eventually be removed, but later on, it was discovered that I had spinal muscular atrophy, and we realized that I would be dependent on the ventilator for the rest of my life, unable to survive without it. Furthermore, it was declared that I wouldn't live to be two years old and couldn't undergo proactive medical treatments such as a tracheostomy.

However, around the time of my second birthday, my parents encountered a support group for parents of children who use ventilators (now known as "Bakubaku no Kai - Living with a Ventilator"). They learned that it was possible for children who use ventilators to live in the community. Thus, they made the decision for me to live at home, and for one year, we practiced adjusting the ventilator and receiving medical care until I was able to return home at the age of three

After returning home, my parents wanted me to lead a normal life in the community instead of a life of always looking at the ceiling of the house. They hoped for my enrollment in a local daycare center and after a year and a half of repeated negotiations with the local government, I was finally admitted to a local daycare center. At the daycare center, they never said that I couldn't participate due to having a ventilator or severe disabilities. Instead, they thought of ways to make things possible for me and made efforts to accommodate me as much as possible. As a result, I was able to have many experiences with my friends.

The journey to enter elementary school was not without challenges, but after repeated negotiations with the Board of Education, I was able to enroll in a local elementary school. In elementary school, they required parental accompaniment for four years, but both the teachers and my friends interacted with me normally, always thinking along the lines of “Nothing is impossible, just what can be done to make it possible.” This made my school a more enjoyable and important place for me. Throughout my school life, in any situation, I was never separated from my friends, so we learned and spent time together, enriching my life. This experience led me to progress to a local junior high school, then a regular high school, and eventually to independent living.

Currently, I serve as the representative director of two nonprofit organizations, "Sorairo" and "Pomhouse." Through Sorairo, since 2003, we have been providing a caregiver dispatch service to enable individuals using ventilators or requiring medical care such as gastric tubes and suctioning to live as naturally as possible within the community. At Pomhouse, since 2012, we have been conducting training programs for medical care, including sputum suctioning, in order to foster healthcare professionals.

Now, on October 7, 2022, the United Nations Committee on the Rights of Persons with Disabilities issued recommendations to the Japanese government, calling for the cessation of segregated education and other measures. Globally, Japan is still struggling to achieve inclusive education, which means education that does not separate students on account of disability. The reasons for this include the reluctance of administrations and educational institutions to embrace change, as well as the lack of infrastructure and support systems, including trained personnel. However, I believe that segregation is an issue of human rights. Based on my own experience, I know that it is possible for individuals using ventilators or individuals with any type of disability to learn and live together within the community. Nevertheless, the reality is that children using ventilators are being rejected by local schools. I understand firsthand the sadness, pain, and hardship of being rejected, and it deeply saddens me to think about the children who are still being rejected today.

I believe that everyone should have the opportunity to attend the school they desire, regardless of the type of disability, or even if the individual has a disability at all. Furthermore, I hope for the realization of an inclusive society where individuals with disabilities can live independently in the places they want to reside, not only through inclusive education but also in their communities. In order to achieve this, I want to continue living within the community, sharing my experiences, and taking action to make a difference.