◆Tateiwa, Shin'ya 2009/12/01 「Bioethics: Sharing Japan's Masterpieces with the World」, 『Japanese Book News』62 ［Japanese］
Basically my thoughts on this subject are as follows:
"Most of the subjects which form the focal points of debate and contention in Bioethics involve disability. Most technology is concerned with human performance/ability - or, in other words, with disability. To address bioethics from the point of view of disability is almost the same as addressing bioethics as a whole" (Tateiwa [2007]).
In practice disability studies has considered the various subjects referred to as "bioethics" to be important and has sought to address them ★01. Several aspects of the connection between so-called "bioethics" and what has been thought and written in Japan are discussed in the text quoted above (Tateiwa [2007]), but this book is only available in Japanese. I discuss this topic very briefly in the article I have linked to at the top of this page (published in "Japanese Book News", an English language magazine published by an international exchange fund) on Japanese books about this topic which I think should be translated and published in other countries, and this might be a good place for someone interested in this subject to begin. In that article I also discuss Masae Kato (加藤 雅枝)'s Women's Rights? The Politics of Eugenic Abortion in Modern Japan (Kato [2009]) ★02, a book that deals with the subjects discussed below and has been translated into English. What follows is less a consolidated presentation of these issues - something I have undertaken in several books - than a record of various events and episodes ★03.
■ 1970
I have already written in ［１］ about a change in the disabled movement that occurred when a movement emerged in opposition to attempts to gain clemency for a woman who had killed a daughter with cerebral palsy (the girl was two years old when she died and the extent of her disability was not known), and in another text I have also written the following about this movement:
"In the past I have pointed out ways in which these assertions are inadequate, but from the point of view of protecting human rights they are not impossible to understand. But claims that we must not reject the existence of people with disabilities did not stop there. When a revision of the Eugenic Protection Law which would permit abortion in the case of a fetus with a disability was proposed in the Diet in May of 1973..." (Tateiwa [1990:176]).
What I go on to state in this passage is that when it comes to prenatal screening/selective abortion [Japanese] / [English], while the issue is made more difficult by problems that arise regarding the accommodation of reproductive freedom - this is in fact one point on which there has been a divergence between the women's movement and the disabled movement - "do not kill" is a self-evident imperative, and the problem of what is ethically right or wrong lies not there but within our values/norms. But as the reader is no doubt aware, it has indeed been asserted that it is fine to kill newborns or children with disabilities without their consent (of course in most cases it is impossible to ask for this consent). One of the most well-known people who have made this kind of assertion is Peter Singer ［Japanese］, and he has written about his displeasure at the protests he encountered when he attempted to give a lecture in Germany. He also became quite well-known as a result of protests organized by "Not Dead Yet" [Japanese] ★04, a group that opposes the euthanasia of people with disabilities, when he was hired by an American university. In light of this it is perhaps not possible to maintain that "do not kill" is obvious or self evident (and that what must be dealt with are the issues that arise surrounding what follows from this imperative).
■ 1970's〜1980's
In [1] I described the movement in opposition to reforms of the Eugenics Protection Law - this statute in effect permitted abortion across the board, but its first article explicitly states that "◆この法律は、優生上の見地から不良な子孫の出生を防止するとともに、母性の生命健康を保護することを目的とする".
A movement aiming to amend this law and a counter-movement opposing these changes had already arisen by around 1970. In 1972 legislation was proposed that included a stipulation that abortion should be permitted in certain cases as a result of the condition of the fetus, and opposition to this proposed legislation continued until 1974 when it was discarded without ever having been passed into law. There was also opposition to attempts undertaken in 1982 to remove the "for economic reasons" condition from the law allowing abortion under certain circumstances. Once again no reforms were passed. In 1966 "initiatives to prevent the birth of unhappy children" had begun to be undertaken in Hyogo prefecture, and in 1969 an office aimed at preventing these births was established within the bureau of public health. These initiatives encountered opposition from 1973 to 1974, and eventually some of the activities and sections within the public health system were abolished or had their names changed (for more on the activities undertaken in Hyogo and the movement that arose to oppose them see Matsunaga [2001]).
The women's movement was fundamentally concerned with protecting reproductive freedom, but there were some in the disabled movement who had doubts about prenatal screening/selective abortion or opposed these practices outright. In this sense there were some elements of these two movements which were not in agreement, but these issues were debated between them and among women's groups there were some who adopted a stance of clear opposition to procedures or techniques which would select certain individuals to live or die. For example, since the period in question SOSHIREN (ＳＯＳＨＩＲＥＮ 女（わたし）からだから) has put forward arguments and engaged in social activism regarding reproductive technologies, and one of its members, Tomoko Yonezu (米津 知子), herself a person with lower-limb disabilities caused by polio, has examined these issues and participated in activism as a woman with a disability.
This movement aimed to get rid of any law whose primary purpose was "eugenic protection", but this was thought to be quite difficult to accomplish. In 1994, however, Yuho Asaka (1954〜) (安積 遊歩), herself a person with a skeletal malformation disability and one of the co-authors with myself and others of Ars Vivendi (Seinogihou) (『生の技法』 / ［Korean］／［English］), gave a report on issues regarding the Eugenic Protection Law and disabled women having hysterectomies at the United Nations International Conference on Population and Development in Cairo. The Japanese government became concerned about international criticism and the Eugenic Protection Law was abolished and replaced with the Mother's Body Protection Law (cf. Saito ed [2002]).
■ 2002
For a book addressing these movements and arguments see Masahiro Morioka's Life Studies Approaches to Bioethics: A New Perspective on Brain Death, Feminism, and Disability [2001]. I also attempted to examine some of these issues in chapter nine of On Private Property (『私的所有論』, Tateiwa [1997] ). If a translation of this book is published English readers will be able to have a good sense of what was argued at that time and my own thoughts on these debates.
Here I will discuss only one event in this history. In 2002 the global conference of Disabled Peoples' International (DPI) - for more on events leading up to this organization's founding in 1981 and its early history see Driedger [1988] - was held in Sapporo, Japan. Participants from 112 countries and regions attended and a record of the meeting was published (ＤＰＩ日本会議＋2002年第６回ＤＰＩ世界会議札幌大会組織委員会編［2003］）。There were eleven sub-sections, one of which focused on "bioethics". The activities of the bioethics sub-section take up roughly fifty pages of the book referred to above. There were four topics addressed by this sub-section: genetics and discrimination, bioethics and disability, evaluating quality of life (QOL), and the question of "who should decide?".
カナダ障害者協議会（の国際開発委員会の委員長）Ｓ・エスティの報告に次のような部分がある。「地元に一人しかいない健康保健学の教授が、病院の倫理委員会のメンバーに任命され、いくつかの教育訓練コースを受講し、生命倫理学者を名乗る場合もあります。」消費者・障害者でなく、医療とケアの専門家、「学術的関心」をもつ者が「生命倫理学者」になり、「その結果、「能力主義」が生命倫理の定義となり、医療モデルとして語られていくのです。」（p.275）「私は、倫理学者が病院の倫理委員会に含まれているのを知って、ショックを受けた。この委員会は、医者が治療をやめ、患者の死を幇助するのを認めている。［…］倫理学者が倫理委員会に加わり、これらの患者への医療サービスあるいは患者の生そのものを否定する方法論によって、死刑執行産業の設立を基本的に支援することになっている。」（p.276）そして（今ある）生命倫理に抵抗する別の生命倫理を示していくことが呼びかけられる。
Reference was made to euthanasia, but more time was spent discussing genetic testing and prenatal screening. Speakers from Japan included Tomoko Yonezu and Yuho Asaka. Martina Puschke introduced a German movement called "we will not participate in genetic screening before implantation" (pp. 262-263).
There were a wide variety of other issues which were raised and topics which were discussed, albeit in some cases quite briefly. One such issue was the use of ES cells advocated by Christopher Reeve, an American actor who had played Superman in a series of films and had been paralyzed from the neck down after a spinal injury. Mr. Reeve had become well known and admired in the U.S. for his resolute belief that one day he would recover while at the same time receiving criticism from not a small number of people with disabilities. Questions were also asked about the use of technology by deaf parents who wanted to have a deaf child (both of the participants who were asked about this use of technology opposed it). For more on this issue see Nagase［1997］. There were discussions of "wrongful life" and "wrongful birth" suits in which parents of children born with disabilities or the children themselves alleged that the birth of the individual in question was the result of an error on the part of a doctor or doctors. There was a debate about a statement by a Japanese man who has two children with muscular dystrophy who said "I would never want to experience this kind of suffering again". There was also a discussion of the differences between the approaches taken by the WHO and UNESCO.
ＤＰＩ札幌宣言（ＤＰＩ［2002a］）にはとくにこれらの主題についての直接的な言及はないのだが、ＤＰＩ札幌綱領（ＤＰＩ［2002b］）には「生命倫理」の項目があり、以下のように記される。
「私たちは遺伝学や生命倫理の議論で主要な役割を果たすべきである。私たちは異なったままでいる権利を主張しなければならない。「人間」の能力を１セットの揃いでみる概念やそれに関連した議論を私たちは否定しなければならない。学問の領域において、肯定的な視点から障害のイメージを変えようとしている障害学を推進しなければならない。」
分科会で出された声明はさらに踏み込んだものになっている。
「私たちには違ったままでいる権利があり、障害を根拠とする出生前選択は行うべきではない。［…］パーソンという概念は能力とは関係ない」（p.250）、「選択的中絶は、リプロダクティブ・ライツの中に入らない」（p.289）、等。
そして、この分科会でＧ・ウォルブリング（Gregor Wolbring）[Japanese]★05は次のような発言を残している。
「子どもをもつ権利と、特定の子どもをもつ権利とを分けて考えることが必要だと考えてきましたが、それを説明するのに非常に苦労しています。私のような考え方をする人は、北米では少数派だと感じています。今回、前の米津知子さんの発表を聞いて、彼女も私と同じ考えであることがわかりました。」（p.283）
■ About us
My generation (I was born in 1960) is ten or twenty years removed from the activities discussed briefly in [1] and [2], and as a result have no direct experience of the earlier part of this movement. We have learned about it by reading, hearing people talk about it, and later learning about (and in some cases participating in) the movement after 1980. There are some of us who know about and have become in some way involved in the movement to allow attendance at normal schools/in normal classes, and there are others with no particular connection of this kind. We have come to learn about this and think about it as something which is not necessarily a particularly "academic" issue. As I mentioned earlier there are also people who are involved in "care", and there are others who on the contrary began by doing research and learned about these organizations or individuals by reading or hearing about them or by being invited to participate in their groups or events.
Some of the people previously discussed such as Yukako Ohashi(大橋 由香子), Yukiko Saito(斉藤 有紀子), Mariko Tamai(玉井 真理子), Azumi Tsuge(柘植 あづみ) and Yoko Matsubara(松原洋子) are directly connected to the group known as SOSHIREN mentioned above (in some cases they are not actively involved in the group's activities themselves but have connections to the group or some of its members). Others like Yoshihiko Komatsu(小松 美彦), Takashi Tsuchiya(土屋貴志), and Yasutaka Ichinokawa(市野川容孝) met these people and learned about their movements/assertions either before they started writing on these subjects or after they had begun to do so on their own. Morioka [2001], a work mentioned above, is a text by one such author. I am also one of those who falls into this category.
I suspect that there are more scholars writing on issues of bioethics who have some connection to (or at least some knowledge of) the arguments/movements of people with disabilities in this country than in most others. There are several such movements and there is an accumulation of works by people who have written on these subjects while addressing their assertions and becoming directly involved in them. These works should not all be grouped together and must be evaluated separately, but while the total amount of research and the total number of texts related to bioethics itself is not large, the ratio of those individuals working in this field who address the movements/assertions of people with disabilities is quite high. I will describe them in more detail elsewhere.
■ Notes
★01 日本語訳のある障害学の本における記述の紹介として以下。
「マイケル・オリバー『障害の政治』は英国の障害学の著作としてよく言及・参照される本だが、中絶法（the Abortion Act, 1967）に言及した箇所がある。「中絶の決定は二人の医師の手中に収められることとなった。はじめは障害とハンディキャップを定義することの難しさについて議論がなされるが、最終的には［医師］個人の私的な判断にもとづいて中絶の決定がなされるだろう。しかし、その医師は、どのような訓練を受けたとしても、彼らが健全な心身をもつ個人のイデオロギーの拘束から逃れることはできないのである。」（Oliver［1990＝2006:106-107］）
そして次の二つの文献を引用している。
「障害者が優生的中絶を正当なものであると認めるならば、そのことによって自らの人生の価値を傷つけることになるということは、一般的に一致した意見である。」（Graham Monteith［1987:38］）
「もし健常者社会において障害をもつ人々が権利を有する対等な人間であると承認されるなら、スクリーニングと中絶が社会に利益をもたらすという考えや、ハンディキャップをもった人は社会のために早めに殺されたほうがよいとする考えは破棄されなければならないだろう」（Davis［1987:287］）
次にやはり英国で障害学のテキストとして出されたバーンズ他『ディスアビリティ・スタディーズ』。
「つい最近の欧州における障害者会議において、障害者インターナショナル（ＤＰＩ）が作成した基本的人権の一覧（DPI［1982］）に、”生きることの権利”や”親になることの権利”を含むべきだとの勧告があった（CSCE［1992］）。なぜこのような権利が障害者にとって差し迫った問題になっているのだろうか。」（Barnes et al.［1999＝2004:286］）と始まり、中絶、安楽死、新しい遺伝学についてのいくらかの記述があり、障害胎児の中絶について、先に引かれたのと同じディヴィスの、1989年の文章が引用される。
「多くの障害者にとって、このようなことはインペアメントのある人々に対する一般の人々の敵意のあらわれと感じられる。二分脊椎者または脳性麻痺者は、このような理由に基づく中絶を容認するような社会的傾向によって、自分たちの価値がおとしめられていると感じる、あるいは恐怖を感じるようになっている。障害者の生まれる権利を否定する一方で、生きている障害者の平等権を正当化するのは無理がある。「もし、胎児が特定の状況にあるために、殺すのが正しく適切だと決定されるのなら、なぜその胎児と同じ状況にある人々が、単に年齢を経ているというだけで、権利を認められるのだろうか」（Davis［1989:83］。」（Barnes et al.［1999＝2004:288］）
その「学」と、そこでなされている議論がどの程度のものとして認知されているのか、それもよくはわからない。ただ、主張が取り上げられ、主題的に論じられることもないではない。例えばBuchanan et al.［2002］では、「障害者の権利擁護派」の議論が紹介され、それを批判して遺伝子介入・積極的優生学を擁護しようとする（この議論をさらに検討し、批判しているのが堀田［2005］）。
たぶん、議論になることは、無視されることよりはよいことではある。そして、議論が始まった以上は続けるのがよいのではあろう。私たちもまたそこに参加するのがよいのかもしれない。たとえば先に紹介した２冊での記述については、すぐさま、「いや障害者に敵意は持っていない、否定はしていない」といった反論があるだろうが、さらにそれに返す言葉はある。しかしそれに対して今度は「やはり障害はない方がよいではないか」などと言われる。するとそれについて考えることになる。ここではその検討・考察は行なわない（立岩［2002b］で、いくらか、行なった）。ただ、学問は論理が勝負を決めるとはいえ、その社会における大勢というものがあり、めったに疑われることのない価値があり、それに乗っている立場に対するのは、ときに疲労を伴う。
世界に批判は存在してきたし、存在している。ただ、同時に、そのことが言いにくいそうではあるように思う。例えば英国でも、出生前診断について批判的な言辞が表に現れるのは、そう以前のことではない。田中耕一郎は、英国と日本の障害者運動の歴史（の並行性）を記した著書の一部で、優生保護法に対する青い芝の会、全国障害者解放運動連絡会議（全障連）の主張に簡単にふれた後、英国での議論を短く紹介している。
「イギリスの障害者運動において、比較的早くからこの優生問題を論じたきたモリス（Morris［1991］）は、イギリスにおける障害胎児の中絶が障害者運動内部においても最近まで重要な問題として取りあげられてこなかった理由の一つとして、イギリスの個人主義の伝統によって、障害児の養育が伝統的にパーソナル・コストとして捉えられてきたことをあげている。」（田中［2006:179］）
なかなか難しい。その感覚が共有されうる場があると、それが表出される。次に紹介する場はそんな場だった。」（立岩［2007］）
★02 A Japanese scholar who lives in Holland and belongs to the Asian studies department at the Leiden University. Other works include Shogaiwomotsuhitotachihenofuninshujutsu - kojinshuginonakano"yuusei"?( Sterilization of people with disabilities -- "eugenics" within individualism?)(Kato [2003]) and Orandaniokeruchuzetsutosenbetsutekichuzetsu (Abortion and selective abortion in Holland)(Kato [2009]).
★03 In addition to the book which contains the chapter on prenatal screening/selective abortion cited later in this text, other works in which I examine and critique arguments concerning euthanasia/death with dignity include Yoishi (Good Death (?))(『良い死』,Tateiwa [2008]) and Tadanosei (Sole Life)(『唯の生』, Tateiwa [2009]).
★04 I have introduced Japanese readers to this incident in several texts as follows:
"Groups and organizations of disabled people have become an important faction among those in opposition [to euthanasia]. I am not aware of any books or papers which provide a thorough description of these groups, but the following organizations are mentioned on our website: "International Anti-Euthanasia Task Force"[Japanese] and "Not Dead Yet" [Japanese]. The former is an international organization and the latter is a grassroots group based in America. There are links to their websites and translation of some their materials on our site. Quite detailed information is provided. There are specific criticisms of the Hemlock Society and Dr. Kevorkian. These groups strongly advocate self-determination but also oppose euthanasia. I think the meaning of this position is one of the most fundamental issues which must be considered regarding euthanasia."(Tateiwa [2001-(4)])
In February of 2001 the subject of Euthanasia was raised on an NHK television program in which I was one of the commentators. In the very limited time allotted "I introduced the website of an American organization of people with disabilities mentioned in the April issue, and drew attention to the fact that there are some people who address this aspect of the issue. It is often assumed that those who oppose euthanasia are adherents of Catholicism or another religion with similar doctrines, but there is in fact another kind of criticism (albeit with less influence) which focuses on what should be done regarding social values concerning disease and disability and how society in general should be constructed. This line of criticism emerges from a different perspective than that expressed by people like Herbert Hendin (whose work is also introduced in the same issue) who view a desire for suicide as a psychological pathology" (Tateiwa [2001-(6)]).
"It is not as though there is no one who opposes euthanasia in foreign countries. Nor can it be said that opposition to this practice is limited to Catholics or others who have a religious belief in the sanctity of life. In America, for example, the following passage can be found on a website [of an organization] called "Not Dead Yet" [Japanese]: "Americans with Disabilities don't want your pity or your lethal mercy, We want freedom. We want LIFE". Looking further we can find other organizations such as The International Anti-Euthanasia Task Force (a brief description of this organization can be found on our website).
I do not know the scope of this organization's activities or the extent of its influence. It does not seem to be very large. I have not seen it referred to in books or articles on this subject. (For this reason I went out of my way to mention this group in the brief time I was given to speak during an episode of NHK Educational Television's "Ningenyuuyuu" program entitled "Establishing a euthanasia law - What do you think?" broadcast in February of this year). Put simply, there are people who want to live everywhere. Patients living with ALS in Japan have gone to conferences and meetings in other countries to make this point." (Tateiwa [2004:341]).
★05 A biologist born in Germany in 1962 and now residing in Canada, Gregor Wolbring is one of the founders of the World Federation of Thelidomiders and the International Network of Bioethics and Disability and the former vice president of the Canadian Centre on Disability Studies. For one of his works which has been translated into Japanese see Wolbring [2008]. He also gave a presentation on October 19th at the 16th Meeting of the Kansei branch of the Society for Disability Studies.
■ Bibliogaphy(Japanese)