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Euthanasia debate lacks understanding: Ex-CEO of Japan soccer club choosing life with ALS

Satoshi Onda, who has ALS, is seen promoting the email address he uses for other people with ALS to enter into consultations, in this image from his Twitter account. The text above the email address reads, "You are not alone!"

OSAKA -- Two doctors in Japan have been arrested on suspicion of murder for hire, after they reportedly administered drugs to a woman with amyotrophic lateral sclerosis (ALS) that killed her. The two men had not met the patient face-to-face before allegedly killing her at her request, and evidence remains that she wished to be euthanized and that money changed hands between the parties.

    The case has prompted a national conversation about assisted dying, with some calling for further debate about legal provisions for ideas around euthanasia and death with dignity. But one ALS patient is warning against hasty discussions, saying, "First I want people to understand the reality of the condition, and of being someone who has it."

    In April 2014, Satoshi Onda, 42, had just been named CEO of Gifu Football Club, operator of soccer team FC Gifu, when he was diagnosed with ALS. Initially he didn't publicize his condition, and worked hard to improve awareness about the team, successfully increasing the number of fans in the stands. But the disease's progression didn't wait for him. First he started to lose his grip strength. About 18 months after developing ALS, he was forced to go about his daily life in a wheelchair, and by the end of 2015 he had vacated his post.

    Onda updated his blog in response to the euthanasia case. He prefaced his remarks by saying that among ALS patients "there are sections who are for euthanasia and sections that are not," and wrote, "I wonder how many ALS patients she knew who say that they are happy even with ALS. Across this country, there are some patients who are more active than I am."

    Although Onda uses a respirator and is confined to his bed, he continues to work after stepping down from his position at FC Gifu. Now he uses voice-controlled software to deliver speeches and write articles as the head of his company Manmaru Shoten. He was even chosen to be an Olympic torch runner for the Tokyo Games.

    In the murder for hire case, it has emerged that the patient got into contact with the now-arrested doctors via social media. Onda said, "Social media can be a weapon, but it can also be a tool for defense." He explained, "The patients who have come before me gave me many tools to defend myself with, and with the support of many people I've been able to create the basis for my current lifestyle."

    Onda then went on to say, "I'm asking first for people to try to understand what kind of an illness ALS is, and what the reality is for people who have it, before debating the rights or wrongs of euthanasia."

    "It's not a one-or-the-other choice as 'Do we go on in a living hell, or do we choose to die to free ourselves from that living hell?'" Onda emphasized. He said he wanted to keep looking for ways to improve his everyday experience, without choosing either option.

    "We can live normal lives because of the dedication of doctors and care takers who do understand the reality of ALS. If this minority could become a majority, the idea that there are only two choices would naturally disappear too," he said.

    Responding to questions from the Mainichi Shimbun about moves over the legal provisions around euthanasia and death with dignity, Onda said, "For people who want to die from the bullying and depression, they are led to services such as consultation hotlines to find a way for them to live, and there are no prevailing views that we should let them die." He added, "If you have the appropriate care givers, then ALS is an illness you can still live normally with." Asked how he would feel if legal provisions were made for euthanasia, he said, "It would be accepting people to choose death without thinking about solutions."

    Onda has set up consultation hotline for other ALS patients via an email address, (Japanese language only). His message to them is that they aren't alone. He has also uploaded a video to YouTube, in which he expresses the message, "I believe that even a person with serious disabilities thinks 'I want to live true to myself.'"

    (Japanese original by Hirokage Tabata, Osaka Science & Environment News Department)

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