In Memory of Hiromi Ebihara - Director's Blog



TOP > Director's Blog > In Memory of Hiromi Ebihara

Director's Blog

In Memory of Hiromi Ebihara


I am very saddened by the news that Hiromi Ebihara passed away in December last year. She was the author of the article "When Education Changes, Society Changes" (2020), published on this CRN website on March 19, 2020 along with the English translation on December 3, 2021, I happened to see the news on the internet*. She was only 44 years old.

I asked Ms. Ebihara to contribute an article because of something that happened one day. A member of a citizen's group had read my blog on "Inclusive Education in Japan" in the "Something's Strange" series in which I express my usual feelings of doubt, and sent me some feedback saying that they shared a similar awareness of the problem. A few years ago, when a symposium on inclusive education was scheduled to be held at Tokyo Metropolitan University by the Japanese Society of Child Science, I asked the organization to recommend a speaker, and it was then that Hiromi Ebihara was introduced to us. She was respected for her tremendous energy and a lively big-sister personality. Because of her physical disability and respiratory difficulties due to spinal muscular atrophy, she had to breathe oxygen from a tube while on a stretcher. In her energetic and cheerful way, she taught us many things about inclusive education. We were inspired by her message, and asked her to contribute her thoughts by writing an article for the CRN website.

As I continued reading the article, I realized that the bright and always cheerful female student with spinal muscular atrophy (SMA) who had left such an impression on me more than twenty years ago had indeed been Hiromi Ebihara. I did not remember the student's name, but only her mother's name. Her mother, who pushed her wheelchair, was "Keeko," which was a very unique name since "Keiko" is the usual spelling. News on the internet gave her mother's name as Keeko, and after more than twenty years, the two images of a cheerful girl and an energetic woman in my head merged into one.

As a pediatric neurologist, I am familiar with breathing difficulties due to progressive muscular weakness caused by muscular dystrophy and have much experience in the medical treatment and education of children who must rely on ventilators. National surveys of children who are dependent on ventilators at home and research on the topic from the perspective of medical ethics, which is now an important medical issue, have been central to my formation as a physician. In some countries, there are still cases where a decision is made not to use a ventilator when the child has spinal muscular atrophy or muscular dystrophy, for which there is no chance of recovery.

Once after I presented the results of a national survey in Japan at an international conference in Chiang Mai, Thailand, a well-known pediatrician from Canada came up and criticized me with an angry red face, "If you thought about the burden on the family, it would be clear that you shouldn't be doing that (putting them on ventilators)."

Whenever I gave a talk at an international conference on the subject of children who depend on ventilators, physicians in other countries responded with criticism. In one presentation I said, "According to textbooks, artificial respirators should not be used, and even if they are used, they do not change the life prognosis. But it is possible to actually live with such a condition for years." I remember the renowned doctor who is the author of the well-known textbook on muscular diseases of children responded to me ironically that if that is the case, I should perhaps write my own textbook. However, not only in Japan, conditions around the world are now undergoing change.

For someone like me who dealt with this sort of discord, Hiromi Ebihara, then a young woman and student with a bright and optimistic viewpoint, was a strong, uplifting encouragement.

I am at a loss for words and overcome with emotion. May she rest in peace. May her words and wish that "When education changes, society changes" live on through us.

  • * Osuga, Nobue. "Shizuoka koen no yokujitsu shikyo, Ebihara Hiromi-san inkurushibu kyouiku no sakigake "saigo no nikusei" koukai [Hiromi Ebihara, the Pioneer in Inclusive Education Passed Away on the Following Day of Lecture in Shizuoka; Her Last Voice Published]". Anata no Shizuoka Shinbun. Jan. 14, 2022.
sakakihara_2013.jpg Yoichi Sakakihara
M.D., Ph.D., Professor Emeritus, Ochanomizu University; Director of Child Research Net, Executive Advisor of Benesse Educational Research and Development Institute (BERD), President of Japanese Society of Child Science. Specializes in pediatric neurology, developmental neurology, in particular, treatment of Attention Deficit Hyperactivity Disorder (ADHD), Asperger's syndrome and other developmental disorders, and neuroscience. Born in 1951. Graduated from the Faculty of Medicine, the University of Tokyo in 1976 and taught as an instructor in the Department of the Pediatrics before working with Ochanomizu University.