Disability Movement and Inner Eugenic Thought
:A Philosophical Aspect of Independent Living and Bioethics
-- Eubios Journal of Asian and International Bioethics 12(May 2002),94-97.
Criticism of eugenic thought from the perspective of "self-affirmation" and "the fundamental sense of security." What did disabled people think about life and technology in the 1970s? Their philosophy is comparable with DPI’s declaration, “The Right to Live and be Different,” published in 2000. They thought that technology of selective abortion was dangerous because it systematically deprives us of a sense of security that our existence is being accepted unconditionally.
*Page numbers in the original are marked by [(preceding page) / (following page)].
The Japanese disability movement in the 1970s posed an important question about our inner eugenic thought. Their arguments should be one of the focuses of attention for bioethics and philosophy of life in the 21st century. Their philosophy is comparable with DPI’s declaration, “The Right to Live and be Different,” published in 2000 (1). They are considered to be seeking “life studies,” which has broader and deeper meanings than contemporary academic bioethics.
2. The emergence of Japanese bioethics
Japanese bioethics began in the early 1970s (2). Most Japanese scholars still think that Japanese bioethics began in 1980s, but it is questionable. My recent book, Life Studies Approaches to Bioethics: A New Perspective on Brain Death, Feminism, and Disability, 2001, demonstrated that (3).
Women’s liberation groups and a disability group brought a new type of thinking into our philosophy and ethics. It should be noted that “minorities” in our society, that is, women and disabled people, founded Japanese bioethics. In this sense, it started as “feminist bioethics” and “disabled people bioethics.” This made Japanese bioethics somewhat different from “American” bioethics. Feminists and disabled people were mainly grass-root activists; they did not write academic papers or books. Instead they wrote a great deal of leaflets and handwritten documents. We can read them today because their publication finally began in recent years. Japanese “academic” bioethics began in 1988 when Japanese Association for Bioethics was founded. I wrote about Japanese feminist bioethics elsewhere (2), hence, I want to concentrate myself on the Japanese disability movement and its impact on bioethics.
3. Blue Grass Group and its philosophy
In the late 1960s, some disabled people with Cerebral Palsy joined “Blue Grass Group (Aoi Shiba no Kai),” a friendship society for people with CP, and started “independent living” in Kanagawa Prefecture (4). Among them were Koichi Yokotsuka and Hiroshi Yokota, both were the philosophical leaders of the independent living activities at that time. As soon as they joined the group, they began protesting against our society full of discrimination toward disabled people. In 1970, a mother killed her CP child, but the general public sympathized with the mother, not with the killed child. Blue Grass Group accused our way of thinking, and stated that non-disabled people had a strong egoism, that is, our “inner consciousness of discrimination.” They believed that this egoism held by non- [94/95] disabled people was the main source of discrimination. However, interestingly, they thought that not only non-disabled people, but also disabled people themselves shared this consciousness; hence, all of us have to fight against our “inner consciousness of discrimination.” Of course, their main focus was a discriminative society created by non-disabled people, but they did not turn their eyes away from their own consciousness of discrimination.
It is worth noting that they had to fight against their parents, because it was their parents that most strongly suppressed and bound them. They insisted that disabled people must be liberated from their parents first of all. This emotion urged them to live independently from the family. They opposed the idea that attaches importance to the family more than the individual, which was one of the main features of traditional East Asian ethics.
Hiroshi Yokota announced the declaration of activity, “We Act Like This,” in their journal Ayumi in 1970. The following is a translation of the epoch-making document.
We Act Like This
Blue Grass Group (Aoi Shiba no Kai), 1970
* We identify ourselves as people with Cerebral Palsy (CP).
We recognize our position as “an existence which should not exist,” in the modern society. We believe that this recognition should be the starting point of our whole movement, and we act on this belief.
* We assert ourselves aggressively.
When we identify ourselves as people with CP, we have a will to protect ourselves. We believe that a strong self-assertion is the only way to achieve self-protection, and we act on this belief.
* We deny love and justice.
We condemn egoism held by love and justice. We believe that mutual understanding, accompanying the human observation which arises from the denial of love and justice, means the true well-being, and we act on this belief.
* We do not choose the way of problem solving.
We have learnt from our personal experiences that easy solutions to problems lead to dangerous compromises. We believe that an endless confrontation is the only course of action possible for us, and we act on this belief. (Translation by Osamu Nagase, italics by Morioka. See note (5).)
Their declaration was based on the philosophy of “self-affirmation.” They thought that CP people do not need to adjust themselves to society, but that they should present their existence as it is, in other words, the existence as an unsocial and inefficient being.
4. The Eugenic Protection Law Revision Bill and disabled people
In 1972, the Eugenic Protection Law Revision Bill was presented to the Diet. This bill aimed at restricting women’s access to abortion, but at the same time, it contained a clause for selective abortion of a fetus with severe disabilities. Blue Grass Group strongly opposed to this bill because it would deny the existence of disabled people. In the leaflet, “Is It Natural that Disabled People should be Killed?: An Objection to The Eugenic Protection Law Revision Bill,” published in 1972, they wrote as follows.
We disabled people are living. We really want to live.
Actually, many fellow disabled people are trying hard to live their painful lives.
And other people can never judge whether our lives are “happy” or “unhappy.”
Much less can we admit egoistic non-disabled people who kill disabled fetuses because those fetuses are “defective descendents,” and moreover, make an excuse that it is done for the “happiness of disabled people (fetuses).”
All of you citizens, students, and workers.
We strongly oppose to the Eugenic Protection Law Revision Bill that is based on the idea that fundamentally denies the existence of “disabled people,” and hence leads us to kill “disabled fetuses” in their mothers’ wombs.
(Extraction from the document. The expression “defective descendents” was found in Article One of the Eugenic Protection Law.)
The grounds of their opposition were as follows.
First, it contains “the idea of annihilation of disabled people.” Adding a clause for selective abortion of disabled fetuses to the law is equivalent to legally declaring that disabled people do not need to be born in this society. This easily leads us to think that a disabled person is “an existence which should not exist.” As a result, they would suffer more discrimination and harm. Their lives would be more endangered in this society.
Second, disabled people are psychologically disempowered. In the above situation, more and more ordinary people begin to glance at disabled people; thinking, “I wish they were not born,” and these repeated glances slowly deprive them of power to live by themselves and of a sense of self-affirmation. As a result, they are forced to live passive and negative lives separated from the community. Moreover, members of Blue Grass Group thought that this disempowerment process would gradually broaden to include various minorities, and in the end, all of us would fall victim to it. They consider this to be the most dangerous problem lurking behind selective abortion.
Third, “people without productivity” are abandoned. Those who do not have the ability to product goods would be more and more abandoned in the above society. Not only people with congenital disabilities, but also 1) those who became disabled by accident or disease, 2) senior citizens, and 3) physically weak people would become candidates for discrimination.
5. Conflict between women and disabled people
In 1972, women’s liberation groups insisted three points, namely, (a) the state should not interfere in the sex and reproduction of individual women, (b) abortion is a right of women, and (c) we have to create society where women want to give birth based on their own intentions (2). However, the members of Blue Grass Group had a serious doubt about the idea that women have a right to abortion, because such a right logically includes the right to selective abortion, which would suppress and disempower disabled people. They concluded that if “the right to abortion” includes “the right to selective abortion,” it must not be accepted. They accused women’s liberation groups of having the “egoism of people with normal bodies” that belittles and denies the existence of disabled people.
Their accusation was accepted seriously by women’s groups. For example, Kawasaki Women’s Conference stated as follows in 1973.
First of all, we have to criticize the fact that we ourselves have been eroded by eugenic ideology, and that we have discriminated and suppressed disabled people.”
We have been occupied by the logic of efficiency, and we have considered rapidity as virtue. We have been wishing to give birth to a healthy and normal baby. Hence, in the first place, we have to start by confronting our own inner eugenic ideology.” (6)
They stressed the necessity of transforming themselves, and then tried to fight against discriminative society. We should [95/96] pay attention to their words, “inner eugenic ideology.” This phrase implies that the fundamental problem is situated not outside, but just “inside us.” The word “inner” was added to emphasize this. Later, people began to call this notion “inner eugenic thought,” and these words became a keyword in contemporary Japanese bioethics. I believe the question how to tackle “inner eugenic thought” should be a big topic for our international bioethics and life studies.
In 1973, Tomoko Yonezu, Lib Shinjuku Center, said that women were confronted with disabled people by the Establishment. She went on to say that women and disabled people must fight together against the Establishment which indirectly forces women to abort disabled fetuses. (Yonezu was/is a disabled woman.)
In the same year, Lib Shinjuku Center published the article, “the Right to Abortion does not Conflict with the Liberation of “Disabled People.”” They said that women and disabled people should cooperate to build a society where women are delighted to give birth to their babies whether babies are disabled or not. Here the “Paradigm of United Front between Women and Disabled People” was formed, and this paradigm made the basis of the Japanese bioethics movement in 1970s and 80s.
The important points are as follows.
1) Japanese bioethics started as grass-root movements. It was created by minority groups such as women and disabled people in their process of fighting against the Establishment. The year of the birth of Japanese bioethics was 1972-1973.
2) They started their bioethical thoughts by gazing at their own “inner eugenic thought.” Selective abortion and eugenic thinking were something they had to fight against and overcome. They were thinking that reducing the number of disabled children was not the answer.
3) They believed that our society based on utilitarianism and the principle of efficiency must be changed into more humane and less competitive one. In such a society, for the first time, women can give birth to disabled babies and raise them embraced by a sense of security.
In 1974, the Eugenic Protection Law Revision Bill finally failed to pass the Diet. The clause for selective abortion did not added to the law. A group of physicians in abortion clinics have continuously demanded a clause for selective abortion, but every time they insisted it women and disabled people acted against them. Hence, the Japanese law has not had such a clause up to the present. However, we should understand that when a woman has a disabled fetus she is allowed to abort it if she claims “economic reasons.” The debated issue was whether the clause should be added to the law; in other words, it was a debate over the symbolic meaning of the clause when added to the law. (Eugenic Protection Law was revised in 1996, and its name was changed to Maternal Protection Law.)
6. “Self-affirmation” and “the fundamental sense of security”
The problem of “inner eugenic thought” has not been solved because all of us share it inside us and we cannot escape completely even if we wish to. However, it is worse to take our “inner eugenic thought” for granted, and never try to change our attitude. Hence, they thought what is needed was a fight both against the Establishment and against our own inner eugenic thought. The basic characteristic of their bioethics was “fighting.” In this sense, their thoughts and actions were a little different from “bioethics” we are familiar with today, that is, bioethics as a rule-making process by physicians, politicians, and ethicists, or bioethics as a series of analytical discussions for professional scholars. Their thoughts and actions are closer to “life studies” that I have advocated for years (7). Actually, I have studied much from their thoughts, and the idea of life studies has developed through this research. Strictly speaking, their thoughts and actions may be called “life studies” rather than “bioethics,” if the latter should mean some academic analyses and a process of rule-making by ethicists. I had a debate over this topic with some researchers, and the conclusion was that it depends on how we define the concept of “bioethics.”
Secondly, what they were persisting in was a transformation from the state of “self-negation” to the state of “self-affirmation.” Disabled people were denying themselves because they had been led to believe that they were valueless in this society. Women, too, believed that they were less valuable than men. Hence, their fight against the Eugenic Protection Law Revision Bill was an irreplaceable process of acquiring a sense of “self-affirmation” that they are valuable as they are, and they do not have to deny themselves anymore. And once people get “self-affirmation,” most of their inner problems must have been solved. The main theme of their bioethical thoughts in that period was how to acquire “self-affirmation,” and the aim of their bioethical actions was to create society where various people can live with “self-affirmation.” Hence, their bioethics included a therapeutic dimension at its core; this is one of the reasons I want to call their activities “life studies.”
Thirdly, they were trying to protect “the fundamental sense of security.” They did not use these words, but what they really had in mind was this. They thought that technology of selective abortion was dangerous because it systematically deprives us of the sense that our existence is being accepted unconditionally. It is a kind of trust in the world and society, and this trust provides us with the foundation upon which we can survive in our society. This is a sense of security with which I can strongly believe that even if I had been less intelligent, ugly, or disabled, at least my existence would have been accepted equally to the world, and if I should succeed, fail, or become a doddering old man, my existence will continue to be accepted equally to the world. This is the basis of our life upon which we keep sane in this society. I want to call it “the fundamental sense of security.” Selective abortion and some new reproductive technologies are problematic because they systematically erode “the fundamental sense of security” we have to keep protecting. Here lies the most important problem of “new eugenics” in the 21st century.
* This paper was first presented at TRT7, Tsukuba, Japan, Feb.17, 2002.
1) See < http://www.independentliving.org/docs1/dpi022000.html>
2) Masahiro Morioka, “What do we Learn from Japanese Feminist Bioethics?,” EJAIB 8 (1998),183-184. See <http://www.lifestudies.org/feminism01.html>.
3) The topics in this paper were fully examined in my book, Life Studies Approaches to Bioethics: A New Perspective on Brain Death, Feminism, and Disability, 2001, although it is written in Japanese. The translation will be appeared on my website, International Network for Life Studies <http://www.lifestudies.org/>.
4) “Blue Grass Group” is a literal translation of the Japanese, “Aoi Shiba no Kai.” In Japanese, “grass” should be “blue,” not “green.” Shoji Nakanishi writes as follows. “It is true that Blue Grass Movement (Aoi-shiba) by people with Cerebral Palsy in Japan started in the 1960’s and they fought against discrimination protesting “Disability is one of the characters of a person”. This philosophy was very close to the Independent Living [96/97] Philosophy.” See his paper, “Historical Perspective and Development of Independent Living Movement in Japan,” 1997, < http://www.dinf.org/doc/conf/jsrd/z00009/z0000909.htm>.
5) Aoi Shiba no Kai, Ayumi, no.11. Osamu Nagase’s translation is found at <http://www.arsvi.com/o/a01e.htm>. His further commentary: “The following fifth point was added at a later date. <*We deny able-bodied civilization. We recognize that modern civilization has managed to sustain itself only by excluding us, people with CP. We believe that creation of our own culture through our movement and daily life leads to the condemnation of modern civilization, and we act on this belief.> NB. Please note that this translation part was updated in March 2002.”
6) Ayumi, no.19:14.
7) About the idea of “life studies,” See <http://www.lifestudies.org/lifestudies.html>.