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Nothing about us without us; and brain death


Since I came back to Japan, I have been thinking about disabled people's protest at the Albany bioethics conference. I asked an editor of Asahi Shimbun Newspaper whether it is possible for me to publish an essay on this event, then I received a positive reply from her. Yesterday, I finished writing it and sent to the newspaper. It will be published late in this month in the Kansai area and hopefully in the Tokyo area. A great deal of Japanese readers are going to know what happened in a bioethics conference held in the state capital of New York.

By the way, the slogan, "Nothing about us without us" is very hard to translate into Japanese. In the above essay I translated it as "Do not determine anything about us without us" in Japanese. I am afraid the word "determine" might have narrowed the original meaning, but I didn't come up with other appropriate expressions. I found the book "Nothing about us without us" on Amazon.

I have researched the ethics of brain death and organ transplantation for years, hence, in my mind, the issues of disability naturally connects with those of brain death. In Japan, about 30% Japanese do not think a brain dead patient is dead. For them, a brain dead patient is a most severely disabled person. In the US, more than several thousands of brain dead petients are diagnosed to be dead every year, and their hearts and other organs are removed in the state of brain death (In Japan the number is lower than 10). In terms of disability rights, isn't this the violation of the right to life of brain dead (brain disabled) people? For those who think that brain dead patients are not dead, those patients are "living" disabled people with severe brain damage, such as the total loss of consciousness. I would like to know what American disabled people think about this?

Today's Mainichi Shimbun English version published the following report:

Japanese declared 'brain dead' in U.S., Canada make recovery in Japan

Three Japanese people who lost consciousness while they were in the United States and Canada and were declared brain dead by local doctors made recoveries after being flown back to Japan, an insurance company has revealed. >> Read the entire report

Wow! Isn't this awful? Why don't American bioethicists and activists talk about the issue of brain death as an important ethical issue?

Photo: Night in Osaka

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