Ars Vivendi Journal No.5 (August 2013): 8-24

Transitioning towards a Movement That Accepts
Children with Disabilities Just as They Are – The
History of the Association of Parents of Children with
Congenital Limb Defects
Tomohisa Hori* and Robert Chapeskie*Ritsumeikan University, Kyoto, Japan
1 Issues Addressed
1.1 Research Objectives
From the 1970s onwards, movements for the liberation of people with disabilities
have appeared in advanced capitalist countries. These include the independent living
movement in the U. S. and the ‘Union of Physically Impaired Against Segregation’(UPIAS) in the U. K. In Japan the ‘Aoi Shiba no Kai [Green Grass Association]’ hasbeen a leading force in the disabled liberation movement since the 1970s.
What has been described as the distinctive characteristic of the disabled liberation
movement in Japan, in comparison with Europe and America, is its focus on not only
“liberation from institutions” but also “liberation from the family” (Youda 1994:66). For
example, in the context of the disabled liberation movement, Kouichi Yokozuka, amember of Japan’s “Green Grass Association,” has criticized the oppression caused byparental love, writing, “it is our destiny to cast aside the biased affection of our parents,
though we may do so with tears in our eyes and while apologizing for filial impiety”(Yokozuka [1975] 1981:17). He has shown that for people with disabilities the wellintentioned actions taken by parents out of consideration for their children are notalways actions to which consent should be given, and that on the contrary there areclear differences between the perspective of children and that of their parents. “In theend the things our parents do for our sake become extremely oppressive to us”(Yokozuka [1975] 1981:143).
When it comes to sociological research on Japanese people with disabilities andtheir families, too, the discussion has been driven by the raising of these issues. To
begin with, there is the research that brought to light the oppressive state of affairs
within families and led to the idea of “liberation from the family” (Okahara 1990;
Tsuchiya 2002; Kasuga 2001). Masayuki Okahara, for example, in the midst of an
attempt to understand the meaning of “liberation from the family,” suggests that the
problem for people with disabilities is that “the extent to which they are emotionallycaught up within their own families is great, a closed-off space is constructed, and theylose the opportunity to be opened up to the rest of society” (Okahara 1990:78).
Another development that can be identified is, for example, research focusing on
the potential for the self-transformation of parents that arose out of assertions by the“Green Grass Association” that “parents are the enemy” (Youda 1986; Ishikawa 1995).
Hiroe Youda, for instance, suggests that while “parents have dual significance as boththe object and subject of discrimination,” they “will not remain stuck in a state of‘confusion’ forever” and “will start to ‘oppose’ the validity of statements that display
discrimination against people with disabilities” (Youda 1986:16). While research of thesort represented by the work of Youda can be praised for pointing out that parents are
not always entities that seek to exclude people with disabilities, it has done very little8

Ars Vivendi Journal No.5 (August 2013): 8-24

to clarify the extent to which they have actually become “parents who take theirchildren’s side” (Ishikawa 1995:40) and the process and efficient causes of thistransformation.
By focusing instead on the concrete processes by which parent activism hasdeveloped, this paper examines the question of what sort of activities lead parents tobecome aware of their children’s perspective. Specifically, it follows the activities,
mainly on the 1970s and 1980s, of the Association of Parents of Children with
Congenital Limb Defects (hereafter referred to as the “Parents’ Association”) [1]. With
the current endeavors of the “Parents’ Association” to actively assert that “it is fine forchildren to have disabilities” as a point of reference, this paper will clarify how theparents in this group came to transform the status of this assertion.
1.2 Mainstream parent activism and movements critical of it during the period of
rapid economic growth
To begin with, here I would like to clarify the meaning of selecting, out of themainstream of parent activism and critical movements that existed up to that point,
the activities of the “Parents’ Association” to examine in this paper.
The “Parents’ association” was established in 1975, but the mainstream of “parentsof children with disabilities” activism during this period of rapid economic growth wasa movement to demand the expansion of institutions to accommodate children withsevere disabilities. During this period, Japanese social services for people withdisabilities, which had up to that point emphasized policies targeting those with mild
disabilities for whom rehabilitation was possible, began to focus on policies targetingchildren with more severe disabilities. The expansion of institutions to accommodate
children with severe disabilities, in particular, became the central focus of policies
during this period, and within this context the lobbying activities of parents,
spearheaded by the National Association for Children (Persons) with Severe Physicaland Intellectual Disabilities, had a direct influence on the content of the policies
adopted. With declarations such as “we are not trying to put them in an institution andescape our responsibilities as parents” and “[we do it] because our families will fallapart” ( National Association for Children (Persons) with Severe Physical andIntellectual Disabilities1965: 29), parents of children with severe disabilities
emphasized their obligations as parents while at the same time appealing to society forhelp in dealing with their excessive care burden and worries about what will happen to
their children after they die[2].
The movement for the expansion of institutions, which had in this way grown to bequite powerful, was not, however, always a movement desired and accepted by people
with disabilities themselves. One event that made the difference in perspective
between children and parents at this time particularly clear was the appearance of amovement petitioning for clemency in the case of a mother in Yokohama who had killed
her severely disabled child in May of 1970 and the corresponding movement whichthen arose in opposition to this effort.
Here it should be noted that prior to this incident the murder of children withdisabilities by their immediate family, or cases of murder/suicide in families withdisabled children, had not been a rare occurrence. Nor was this the first time there had
been appeals for clemency in the case of a parent who had murdered their disabledchild[3], and public sentiment in most of these cases tended towards sympathy for theparents without recognizing the disabled children as murder victims. At this time the
Kanagawa Prefecture Alliance of Associations of Parents of Children with Physical andIntellectual Disabilities (including the National Association for Children (Persons) with
Severe Physical and Intellectual Disabilities mentioned above) submitted a letter ofprotest to the Mayor in which they stated that “the killing of disabled children who

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have been denied the right to exist by society without adequate institutions or
guidance for families on their treatment and education is an inevitable outcome, andwe object to this lack of social services.” In response to this statement the “Green Grass
Association Kanagawa Alliance” presented the first criticisms of the movement forclemency from the perspective of people with disabilities. For example, on September
6th, 1970 the Green Grass Association’s Masayoshi Koyama, in discussions with the
Kanagawa Prefecture Alliance of Associations of Parents of Children with Physical andIntellectual Disabilities held at the Yokohama City Child Education Center, criticizedthose on the parents’ side: “‘When this kind of incident occurs you point to inadequate
administration of social services as the cause and say that if there were [sufficient]institutions this kind of thing wouldn’t have happened’, he said, but ‘Institutions are
created at the request of parents, and not in any way created from the perspective ofpeople with disabilities’”(Green Grass Association Kanagawa Alliance 1970:5).
Through this criticism of the clemency movement, the fact that “the existence of theperson in question (the person with a disability), who ought to be the most important
person in this instance [the murder of a child with a disability], is being completely
overlooked” (Yokozuka [1975] 1981:80) and the fact that the movement to expand
institutions has been driven only by the desires of “parents, i.e., people without
disabilities” were criticized for the first time from the perspective of people withdisabilities.
In contrast, the activism of the “Parents’ Association” addressed in this paper has
not been developed only from the point of view of parents. As I will discuss, since the1980s the activism of the “Parents’ Association” has been moving towards activism
from the perspective of people with disabilities, and the nature of its assertions has
been shifting. If the mainstream of parent activism during the period of rapid
economic growth can be seen as having been developed only from the perspective ofparents and thus having inevitably given rise to a conflict between the perspectives ofparents and children, the activism of the “Parents’ Association” warrants being
considered as a movement that has developed an awareness of the differences between
these perspectives on the parents’ side.

2 Formation of the “Parents’ Association”
The “Parents’ Association” was formed in August, 1975 through the appeals of afull-time homemaker. The process that led to its creation began with a column,“Sentenijou no ko wo motte [Having a child with a congenital abnormality],” written by
Akiko Nobe and published in the Asahi newspaper (February 6th, 1975). Following
the publication of this column, Ms. Nobe continued to present the perspective ofparents of children with congenital limb defects through mass media, appearing on
television and being published in magazines, and on August 31st of the same year afounding meeting attended by 54 families of children with congenital limb defects washeld in a rented room in Tokyo’s Saginomiya Public High School.
However, “for all of the participants to hold sufficient preparatory discussions witheach other [in advance of the meeting with parents spread all over the country] was not
feasible,” and the meeting was therefore organized “as common ground where, to begin
with, everyone can gather under one roof and talk about how to proceed going forward”(Association of Parents of Children with Congenital Limb Defects 1975:2). As it wasformed by parents and not specialists/experts, it was decided that “[the “Parents’
Association”] will consider all important and fundamental issues about what kinds ofactivities it will carry out in the future after the first steps [in its formation] havealready been taken” and “go ahead and discuss things within the standing committee

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and make decisions from there” (Association of Parents of Children with Congenital
Limb Defects 1995:3). At the first meeting of the standing committee following its
establishment the following concrete plans for future activities were made: “1.
Activities concerning research into the causes of congenital limb defects, 2. Activities
concerning research into the current state of congenital limb defects, 3. Activities
concerning medical treatment for children with congenital limb defects, 4. Activities
concerning issues related to the education of children with congenital limb defects, 5.
Activities concerning relief compensation for children with congenital limb defects, 6.
Activities to facilitate interaction with other support groups/activist groups/researchgroups involved in issues pertaining to (children with) congenital defects, child welfare,etc., 7. Activities concerning the planning of events to promote interaction/friendshipbetween association members” (Association of Parents of Children with Congenital
Limb Defects 1995:292-3). In other words, it was decided that the activism of the“Parents’ Association” should not only be concerned with activities addressing issues
such as treatment and education, but should also be developed with appeals forresearch into the causes of congenital limb defects established as one of its core
activities.
The distinguishing characteristic of the “Parents’Association” is that it was started
more as a movement that aimed, through appealing for research into the causes ofcongenital defects, to assert that “children’s disabilities are things that can happen toanyone” and “children’s disabilities are both a problem for individuals and a problem
for society as a whole” (Association of Parents of Children with Congenital Limb
Defects 1995:v) than as a movement whose main purpose was to engage in policy
demands concerning concrete problems related to things like treatment and education.
Take, for example, the “Kodomotachi no mirai wo hiraku fubo no kai [Opening up thefuture for children parents association]” (an association focusing mainly on parents ofthalidomide children), which is also an association of parents of children withcongenital limb defects and of which the “Parents’ Association” had considered
launching as a subsection before its establishment as an independent organization. As
Ms. Nobe asserts when she says that “[Chairman Susumu Iida] had a close
relationship with the child and family department of the Ministry of Health” and “[Thisassociation] received quite a lot of money”[4], this association received a lot of
donations and subsidies and engaged in welfare operations at places such as childeducation and treatment centers. In contrast, the “Parents’ Association” did not begin
by making concrete policy requests such as “we want institutions built” or “we want
treatment fees to be paid by the government”[4] . It was begun, instead, as a movement
to oppose “prejudice and discrimination against parents of children with disabilities”
and to seek “the understanding of family members and the general public of children
without fingers or who differ from others in shape” (Association of Parents of Children
with Congenital Limb Defects 1975: 1). I will discuss the question of what sort of actual
effects the “Parents’ Association”’s appeals for an examination of causes of congenital
defects had on parents in section 3.3.

3 The 1970s - The family/ expectations of science
3.1 Positioning as families of victims
As is widely known, beginning in the late 1960s residents’ movements in various
local areas arose throughout Japan to address environmental issues. Residents’
movements are movements run by residents of the area in which they are active thatengage in activism to demand the protection/improvement of living circumstances(Nitagai 1976:203-7).
They developed as movements that opposed, from theperspective of ordinary local residents, the rapid industrialization brought about by

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high economic growth/the distortion of industrial structures brought about by regional
development.
As a continuation of this trend, from the late 1970s onwards movements focused on
specific minorities, such as the disabled peoples’ liberation movement and the women’sliberation movement, began to appear in large numbers (Kajita 1991:189). The“Parents’ Association” examined in this paper can be seen as one of these minority
movements, but regarding the activism it engaged in at the time of its establishment
its character seems closer to that of a residents’ movement raising environmental
issues. For example, in 1974, the year before the “Parents’ Association” was established,a settlement was reached in a thalidomide lawsuit, and around this time various
environmental pollutants (SMON, PCB, DDT, etc.) began to be addressed asproblematic. When it came to the children of the “Parents’ Association,” too, there
were suspicions that their disabilities may have been caused by this collection ofenvironmental pollutants.
For example, Keiya Nishimura has said the following regarding the suspicion
within the “Parents’ Association” that children’s disabilities may be the result ofenvironmental pollutants:
We wondered why such children were being born, since we didn’t think it was
something that would be difficult to prevent. We had the idea that somebody must
be doing something bad, somebody must be destroying the environment, misusing
medicines, agricultural chemicals, or detergents; somebody must be creating thesechildren, and we were very angry. So behind the phrase “investigation of causes”
there was indignation about who had stolen these children’s fingers[5].
Mr. Nishimura’s belief that at the time the view within the “Parents’ Association”
was that “children’s disabilities are man-made” and “we are the families of victims” isin no way deluded. If we look at materials released by the “Parents’ Association” at thetime, for example, they assert that children’s congenital defects are “a fear inherent inmodern society,” and that “the causes of children’s defects lurk within the state ofmodern society in which industrial development is given priority over people’s lives”.
And, as the following statement implies, this view can easily be understood as having
been shared by the entire association: “in order to prevent the next misfortune fromoccurring, while bringing citizens onboard we must continue to think about how to
declaim, decry and inform people about the real state of these fears” (Association of
Parents of Children with Congenital Limb Defects 1978:1). Similarly, as the “warning
to humanity” theme often employed by the “Parents’ Association” in joint symposia
with organizations such as the “Kikeizaru mondai kenkyu kai [Monkey deformity
problem research association]” indicates, the claim being made was that “almost all of
our children’s disabilities have some kind of external cause”. It can be establishedthat, based on the belief that “the problem of children’s disabilities we are dealing withis not a problem that belongs to each of us [parents] as individuals...it is a problem thatconcerns the survival of humanity itself” (Association of Parents of Children with
Congenital Limb Defects 1982a: 16), these parents worked to create an understandingof children’s disabilities as a problem belonging to society as a whole by actively
positioning themselves as the families of victims.
3.2 The development of activities related to the investigation of causes
The “Parents’ Association” was thus established, in an era in which various issues
were being raised concerning environmental destruction, as a movement advocating
the investigation of the causes of disabilities in children. In the organization’s founding
document, for example, they demand that the state/ministry of health conduct

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“thorough epidemiological studies and investigations of the causes/current state ofcongenital limb defects,” with the aim of designating/eliminating teratogens that areenvironmental factors. Through these efforts they explicitly sought to ensure that these
sorts of children would not be born in the future, so that “the suffering and sadness ofthe families and the children themselves will not be repeated” (Association of Parentsof Children with Congenital Limb Defects 1995:341). In concrete terms the activities of
the “Parents’ Association” to appeal for the investigation of causes [of congenital
defects] developed as follows.
The parents’ first activity was to gather the medical records of the association’s
members. The purpose of gathering these records was to examine external influenceson the mothers during their pregnancies, and, in this era in which it was plausibly
being asserted that the number of children with congenital defects was increasing as aresult of teratogens, collecting records was something useful the parents could do rightaway. They asked their doctors to provide their medical records covering the durationof their pregnancies. In cases where it was difficult for the parents to do it themselves,
Mitsushiro Kida made the request for documents in their stead [6]. A history of theusage of medical treatments such as prescription medication, x-rays, and vaccines bymembers of the association during their pregnancies was compiled, and an analysis of
this data was conducted. One of the trends this analysis revealed was a high rate ofhormone drug use [7], and this fact was later connected to one of the demands made of
the state/ministry of health.
Appeals to the state/ministry of health by the “Parents’ Association” were carriedout through many specific initiatives. For example, on October 6th, 1978, a “list ofquestions and requests concerning the issue of children with congenital limb defects”
was submitted to each political party and all of the members of the social labor
committee, and a response to this document was then demanded. This “questions andrequests document” contained the following items that illustrate the main demands ofthe “Parents’ Association” at the time: “1. Take measures to supervise the safety andside effects of pharmaceutical products and deal with the problem of the use ofprogesterone drugs, 2. Comprehensively examine all teratogens, 3. Establish
congenital defect centers and conduct epidemiological studies, 4. Improve the system
for research into human genetics and establish courses on human genetics within
university faculties of medicine, 5. Establish an advisory committee on congenital
defects, 6. Address issues concerning thalidomide recognition and continue recognition
efforts.”[8] In other words, broadly summarized their main demands were: 1.
Strengthen the inspection system for teratogens including hormone medications, 2.
Establish institutions specifically to deal with congenital defects, and 3. Continue thework of recognizing the damage caused by thalidomide.
In addition, symposia and photography exhibitions were also held in each region inan effort to increase local understanding of these issues. At symposia held in areas allover the country, for example, various speakers, including doctors, environmental
protection activists, and educators, were invited to give presentations, and the issue ofcongenital defects was addressed from various angles. These symposia spread the ideathat “congenital defects are not just someone else’s problem” and “someday thisproblem could affect me directly.” As a result, the view that “it is not an issue that canbe left up to politicians and experts; we must each think about it in our daily lives froma variety of perspectives, and we must take action” (Association of Parents of Children
with Congenital Limb Defects 1978:2) and a sense of proximity to the problem throughan awareness that children’s disabilities could occur in any family was promoted.
Also, as measures focused more closely on specific regions, photography exhibitions
were staged at places such as department stores, community centers, and city galleries.
Most notably, “deformed monkey exhibitions” were held in conjunction with “Kikeizaru

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mondai kenkyu kai [Monkey deformity problem research association]”, raising thequestion of whether “the deformities of children could, like those of the monkeys,
perhaps be the result of the sacrifices of economic development.” Through the“deformed monkey exhibitions” [it was suggested that] “deformities are increasing
among wild monkeys that are given food,” and this “was happening because monkeys
were consuming the same food eaten by humans.” As a result, it was asserted that“monkey deformities are emblematic of human deformities and the danger ofhumanity’s downfall” (Association of Parents of Children with Congenital Limb Defects
1995:175).
3.3 The effects of science (investigations into the causes of congenital defects)
So what kind of meaning did the appeals for an investigation of the causes ofcongenital defects made by the “Parents’ Association” during the 1970s have for theparents involved? For example, Ichiro Nebashi says the following about the motivation
behind his taking part in the appeals for an investigation of causes made by the“Parents’ Association” at that time.
I went to see deformed monkeys on Awaji Island. Mr. [Minoru] Nakahashi was the
Director [of the Awaji Island Monkey Center], and I went there. What I am goingto say is strange, but I approached them thinking that I might be able to see, evenamong deformed monkeys, these things being inherited. At the time, I was hopingthat congenital defects had appeared even among monkeys. Because if so it would
make it very easy to understand. [The relationship between] environment andinheritance. That mutations arise suddenly as the result of damage caused bydrugs. This was explained to me by Dr [Mitsushirou] Kida; the environment andheredity are closely connected and inseparable issues, and genes are expressed
through an interaction with materials in the environment. When I talk about
prejudice concerning genes, I don’t mean in a moral sense, but in a universal orscientific sense, because there is little understanding of the fact that disabledchildren are born this way, that everybody is born, that we are all created by genes.
This unscientific perspective is unacceptable. When I heard this [Dr Kida’s
explanation of the fact that mutations arise suddenly through interactions
between genes and the environment] it was as though my world had been turned
completely upside down[9].
Mr. Nebashi is a parent of a child with a disability that was determined to behereditary. In the above quotation, while distancing himself with the phrase “what I
am going to say is strange,” he relates how he approached the Awaji Island monkeys
hoping that “hereditary disabilities had appeared even among monkeys.” This was
because, as can be understood from his account, if hereditary disabilities appeared
even among the monkeys of Awaji Island (an issue that at the time was viewed fromthe perspective of environmental pollution), then “the environment and heredity areclosely connected and inseparable issues,” and hereditary disabilities arise not only
because of genes themselves but because of how “genes are expressed through aninteraction with materials in the environment,” i.e., it would be possible to confirm thatgenes are not the determinative cause of these disabilities. He sought to oppose
prejudice and discrimination against parents regarding their children’s disabilities byattempting to find a fundamental cause of these disabilities outside of family lineage
and bloodlines.
This move towards opposing prejudice and discrimination against parents byfinding the cause of their children’s disabilities outside of family lineage and bloodlines
was by no means unique to Mr. Nebashi. For example, “Parents’ Association” founder14

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Akiko Nobe has also said that at the time she started the organization she had “adesire to get rid of prejudice and discrimination by scientifically investigating thecauses [of children’s disabilities].”[4] It was thought that by scientifically uncovering
their causes it could be established that children’s disabilities could potentiallyhappen to anyone and that these disabilities were neither the result of family lineageor bloodlines nor something caused by the decisions or judgment of the child’s parents.
As is related in Mr. Nebashi’s account of the “world changing” experience of learningthat even in the case of heredity environmental factors play a role, the appeal forinvestigation of the causes of disabilities was itself something that brought a certain
kind of liberation to parents by confirming that children’s disabilities were “notsomething caused by family lineage or bloodlines” and “not the parents’ fault.”[10]4 The 1980s - The person concerned (parents and children) / a perspective
focused on daily life
4.1 Investigating causes reaches an impasse
As we have seen thus far, the activism of the “Parents’ Association” in the 1970s
addressed children’s disabilities from the perspective of environmental pollution, anddeveloped as a movement seeking the designation/abolition of teratogens. Entering the
1980s, however, this appeal for the investigation of causes gradually reached an
impasse.
To begin with, as a problem within the organization, around the end of the 1970s
the activities that been undertaken by the “Parents’ Association” on its own in an
attempt to investigate the causes of birth defects eventually arrived at a state of affairs
in which “while several suspicious substances had come to light, specific causes could
not be determined” (Association of Parents of Children with Congenital Limb Defects
1989a: 75). To take hormone drugs as an example, these medications are prescribed to
women who have a heightened risk of miscarriage and thus already belong to acategory with a higher chance of giving birth to a child with a limb defect. There wasalso a real sense that even if the teratogenicity of hormone drugs could be established,because they were not nearly as powerful as thalidomide it would remain difficult toclearly prove a causal relationship.
As a result, confronted with the difficulty of determining causes, the activism of
the “Parents’ Association” began to turn in part towards problems children faced intheir daily lives, such as the issue of recorders used in music class (some activities
concerning educational issues had in fact been conducted since the organization’s
founding, and activities addressing the recorder issue had begun in 1978). For example,
activities dealing with the issue of recorders included demands for the creation of
special recorder programs, public funding, and the use of other instruments being
made of local governments/school boards (Association of Parents of Children with
Congenital Limb Defects 1993: 11). On the other hand, there was also a movement
which maintained that, since suspicious substances still existed, advocacy for theinvestigation of causes should continue even if causation could not be definitively
established. Activities related to the investigation of causes regarding various
substances continued, including efforts focusing on the progesterone drug Doginon, theanti-nausea drug Bendectin, and Agent Orange. These efforts too, however, ground to ahalt by the late 1980s without having been able to obtain any significant results. Also,
as an example of influence from outside the organization, the fact that the movement
to promote fetal screening and selective abortion as a secondary preventative measure
had become prominent at that time made it impossible for parents to avoid becoming
sensitive to the dangers inherent in advocating for the investigation of causes.
To begin with, in 1979 a congenital defect monitoring research group (hereafter15

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referred to as the “monitoring group”) was formed within the ministry of health in thename of “fully engaging in the construction of a congenital defect monitoring system.”
When the “Parents’ Association” first learned of the monitoring group’s creation, they
expected its activities to simply reflect the appeals they had been making for more
research. Later it became clear, through discussions with this group and the reports it
issued, that the monitoring group’s research placed an emphasis on genetic and fetal
diagnosis, and over time the “Parents’ Association” became increasingly wary of it. In
particular, when the “Parents’ Association” learned of efforts to submit a proposed
Maternal and Child Health Act in September of 1985, as a result of the fact that one of
the legislation’s main principles was the promotion of genetic counseling and fetal
screening (secondary prevention) under the name of a “newborn monitoring system forthe monitoring of the births of children with congenital defects (primary prevention),”the organization directly opposed its passage and submitted a written statement of its
contrary views (Association of Parents of Children with Congenital Limb Defects
1989a: 117-24).
Another development that was also related to this effort to promote secondary
prevention was the “Parents’ Association”’s appeals for the investigation of causes
becoming a major target of criticism from the disabled people’s liberation movement, amovement that was in conflict with the movement against pollution/harmful
medication. For example, in November of 1984 the “Parents’ Association” had ameeting with the “National Green Grass Association”[11]. The “Parents’ Association”’s
push for the investigation of causes, “presumably comes from the idea that the birth ofchildren with disabilities is ‘something that should not happen, a special case, anunfortunate event’. Assuming this is the case, is the potential for discrimination notinherent in this starting point?” This kind of assertion was the main thrust of thecriticism leveled against the “Parents’ Association”.
Of course, it was possible to respond to this criticism from the “National Green
Grass Association” by saying, “no, these children’s disabilities are not simply natural
disabilities; they are man-made disabilities, or “damage”. This being the case, isn’t itnecessary to thoroughly pursue the causes and perpetrators of this damage?”(Association of Parents of Children with Congenital Limb Defects 1989a: 112-4). In
other words, it was possible to respond by reaffirming the distinction between primaryprevention and secondary prevention. The statement opposing the Maternal and Child
Health Act submitted by the “Parents’ Association,” for example, asserted that“monitoring is fundamentally something done in order to watch for and eliminate
harmful substances, and is distinct from questions concerning the treatment andwelfare of children with disabilities” (Association of Parents of Children with
Congenital Limb Defects 1989a: 125), and the importance of censuring those who cause
harm was recognized. It was also argued during discussions with the “National Green
Grass Association” that “the matter of these children being born and living as children
with disabilities is a separate issue; [the “Parents’ Association”] has been engaged ininvestigating the causes [of disabilities], not preventing the birth of children who havethem.”[11]These sorts of responses aside, however, going forward the parents of the “Parents’
Association” were no longer able to develop their appeals for causal investigations
without facing criticism. They developed a considerable understanding of the danger of
appeals for the investigation of causes being understood as something different fromwhat they intended.
4.2 Differences between the perspectives of parents and children
Entering the 1980s, the appeals for investigation of the causes of disabilities thatparents had been making while positioning themselves as the families of victims had

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thus seemed to have reached a dead end. Ultimately, the result of this was that going
forward the “Parents’ Association” movement became one in which the difference inperspective between parents and children was accepted; in specific terms, ittransitioned into a movement within which the assertion “it is fine for children’s
disabilities to exist” could be made.
4.2.1 The parents’ perspective
Here, to begin with, I would like to establish the assumptions/impetus behind the“Parents’ Association”’ s shift towards the assertion that, from the parents’ perspective,“it is fine for children’s disabilities to exist.” As my space is limited, I will make only
the two following points.
First, it must be said that a substantive reduction in the various burdens born by
the parents of disabled children in the “Parents’ Association” was a prerequisite for thetransition that would result in these parents coming to believe that “it is fine forchildren’s disabilities to exist.” In addition to a) the fact that in the case of the “Parents’
Association” the children’s disabilities were minor to start with and thus did notpresent serious burdens for their parents, b) around that time, the maturation ofchildren and advice from adult members began to reduce parents’ concerns about the
future. Also, c) through the activities undertaken in the 1970s these parents had to acertain extent been freed of their prejudice and discrimination against disabilities.
Furthermore, d) according to Yoko Matsubara around that time a sense of taboo
concerning “eugenics” began to permeate the public consciousness (Matsubara 2000:
223-4); understood in a different way, prejudice and discrimination against disabilities
ceased to be socially justified. In other words, for parents disabilities were no longer
disabilities (defects/inconveniences); disabilities became (or got closer to being) nothing
more than attributes that had arbitrarily been given negative value, and along with d)
this indicates a state of affairs in which it was easier to call out prejudice anddiscrimination where it existed in society.
Second, against the backdrop of the movement to promote secondary prevention
and the emergence of “eugenics” as a controversial social issue, parents acquired a newawareness of prejudice and discrimination towards disabilities. In the course of actively
asserting that “it is fine for children’s disabilities to exist,” the “Parents’ Association”
came to oppose secondary prevention measures. For example, through the decision ofwhether or not to give birth to a child with a disability being left up to the parents, or
through others viewing this kind of decision as possible, the responsibility of parents ingiving birth to children with disabilities once again began to be considered.
Through techniques such as fetal testing, the science I had been counting on
entered, on the contrary, an era of choosing between lives that should not be born
and lives that should be selected; this is what the 1980s were for me. As a motherwho had given birth to a child with a disability, my shame and feelings of guilt andself-blame were further compounded through the spread of these new technologies
which had already begun to plant in the minds of ordinary people the idea thatchildren with disabilities should not be born: “Why did you give birth to such achild now that we are in an era in which it is avoidable?” I felt that through science
I was once again being marked with a label[4]. [Emphasis is the author’s].
If appeals for the investigation of causes in the 1970s can be seen as having
brought some measure of liberation to parents by scientifically confirming thatchildren’s disabilities were “not caused by family lineage or bloodlines” and were “notthe parents’ fault,” then in the 1980s “the spread of [scientific] technology” conversely
increased this blame and suspicion of wrongdoing. Parents of children with hereditary17

Ars Vivendi Journal No.5 (August 2013): 8-24

disabilities were particularly sensitive to this movement towards the promotion of
secondary prevention measures. This sensitivity was the result of the fact that the
spread of technologies such as fetal testing was directly connected to various issues
such as the birth of second children or grandchildren and was thus not something theseparents could ignore or view as having no connection to their own families.
The key events behind the “Parents’ Association” fully engaging, as anorganization, in these issues concerning parents of children with hereditary disabilities
were Watabe’s essay in October of 1980 [12] and the movement to reform the Eugenic
Protection Law in 1982[13]. Watabe said that it is desirable for people with hereditary
disabilities to autonomously choose sterilization, and parents of children withhereditary disabilities criticized this as an inexcusable assertion. Around this timeparents also learned that diseases found within the “Parents’ Association” were
included among the “undesirable offspring” cited in article 1 of the Eugenic Protection
Law and that there had been a movement to include a provision for fetuses; as a result
they were once again forced to acknowledge prejudice and discrimination against
people with disabilities (Association of Parents of Children with Congenital Limb
Defects 1995:259-67).
4.2.2 The children’s perspective
So what about the children’s perspective? How did parents come to understandthat there were differences between their perspective and that of their children?
To begin with, from the 1980s onwards, while continuing the symposium andphotography exhibit activities they had developed up to that time, they started toreexamine the assertions that were being made within the context of these activities.
This occurred not only because the parents’ efforts to appeal for investigations into thecauses of disabilities had been brought to a halt, but also because along with an effort
to more actively interact with their children they were attempting to find a newunderstanding. In particular, within the photography exhibition activities carried out
in various local areas across Japan the first signs of a conflict among the parents and ashift in assertions could be found at some local branches even as early as the first halfof the 1980s.
The “Parents’ Association” had been staging (since the late 1970s) photography
exhibitions of monkeys with missing legs and arms (deformed monkeys), animals
which had become emblems of environmental pollution and had received a lot of
attention from the mass media, and a female elementary school student requested
that they “stop putting up my photograph beside pictures of monkeys”. This may
have been a child’s objection more to the paradox lurking within the feelings ofparents unable to accept their children with congenital limb defects as they arethan to the investigation of causes itself. (Nobe 2000:114)
In the “Parents’ Association” photography exhibits held in the 1970s, photographsof children were displayed alongside those of deformed monkeys in order to make thecase that these children’s disabilities were being caused by environmental pollution(these were the “deformed monkey exhibitions” discussed in section 3.2). But theparents gradually began to have doubts about this method of drawing attention to thisissue. One parent, for example, expressing a feeling of resentment distinct from a senseof achievement at having staged the exhibition, wrote in the organization’s journal:“many people did indeed come to see [the exhibitions]. Whole classes of high school
students visited one after another. But they just looked without any sense of
responsibility and left after satisfying their selfish curiosity” (Association of Parents ofChildren with Congenital Limb Defects 1995:177). Also, as is indicated by the way in18

Ars Vivendi Journal No.5 (August 2013): 8-24

which the “paradox lurking within the feelings of parents unable to accept theirchildren with congenital limb defects as they are” mentioned in the passage cited above
was addressed as problematic, voices of doubt began to be raised among other parents
who felt that “if we acknowledge that the word “deformed [kikei]” is used in a
discriminatory way in our society, shouldn’t congenital limb defects and the word
“deformed” be seen as incompatible?” (Association of Parents of Children with
Congenital Limb Defects 1995:177-8).
In actuality, however, as an impetus behind the kind of circumspection among
parents noted above (an impetus behind their coming to feel uneasy about “deformedmonkey exhibitions”), there was also, slightly before this period (the early 1980s), thefact that the opinions of adult members[14] had been discussed repeatedly within theorganization. Opinions from the perspective of children had indeed been addressed in
the association’s journal even before this time, but because in most cases they had been
the opinions of small children who tried to guess what their parents would think
opinions from the perspective of people with disabilities had not been directly discussed.
Then in 1979 adult members began to take the stage at symposia, and this led toopinions from the perspective of people with disabilities being discussed extensively
within the organization. At one symposium, for example, adult member Mayuri Honda
said the following about uneasiness toward the appeals for the investigation of causes
being made by the “Parents’ Association.”
We must pursue and eliminate the causes behind the increase in the number ofpeople with disabilities: this has become an effort to raise the issue of “medication
X” being bad. The people in question, however, are already doing their best to livewith their physical deficiencies in the midst of a society that cannot be described as
ideal for people with disabilities. ...and going forward - while I cannot say we areable to live comfortably because to do so would be mere bravado - we should be
able to go on living. To be completely healthy and able-bodied may be ideal, but tonot be so does not mean we are defective people or that we find life difficult.
(Association of Parents of Children with Congenital Limb Defects 1982b: 91-2)
Ms Honda’s point about “not finding life difficult” is connected to the fact that thedisabilities dealt with by the “Parents’ Association” are congenital, and here it can be
confirmed that unease about the organization’s activities related to the investigation of
causes was at least being discussed. Similarly, at the same symposium adult member
Sayoko Shizawa also talked about her current circumstances as someone living with adisability, saying, “people say that life must be quite difficult, but I almost never feelthat way” (Association of Parents of Children with Congenital Limb Defects 1982a:
227-8).
Adult members of the “Parents’ Association” then began to “participate in theassociation’s activities in various ways and support the initiatives of the Parents’
Association” (Association of Parents of Children with Congenital Limb Defects
1995:281). For example, beginning with Sacchan no mahou no te [Sa-chan’s Magic
Hands] (created by adult members Ms. Shizawa and Seiichi Tabata/the “Parents’
Association”/Ms. Nobe), adult members took part in the editing of many of thematerials published by the “Parents’ Association,” and from this point forward adultmembers can be seen to have exerted a powerful influence on the organization’s
activities.
4.3 Development of activities based on daily life
Following these developments, in the early 1980s the “Parents’ Association”’s
photography exhibitions transitioned towards “exhibitions of photographs of children

19Ars Vivendi Journal No.5 (August 2013): 8-24

with limb defects and the bodies with which they were born (exhibitions of photos ofchildren only)” and in the late 1980s the titles and contents of these exhibitions
reflected a further shift towards “friends full of life photography exhibitions(exhibitions of photographs emphasizing images of children who are smiling and full ofenergy).” Instead of the “photographs of sick children portrayed as the victims ofenvironmental pollution and society’s development” designed to “make viewers feelpity,” exhibitions of photographs of lively looking children began to be held that focusedon their everyday lives and gave viewers the impression of “looking at pictures of theirfriends” (Association of Parents of Children with Congenital Limb Defects 1995:179).
In addition, the symposia that had been held on an ongoing basis up until thattime began to be held as “children’s symposia” at which children played a prominentrole rather than as venues to appeal for the investigation of the causes of disabilities.
At “children’s symposia” children took the stage to read compositions they had written
and give performances using modified musical instruments. For example, at a“children’s symposium” held at the organization’s Saitama branch in 1983, over 250
participants watched “children [talk] about their own thoughts and experiences” at an
event entitled “Children beginning to speak about life” (Association of Parents ofChildren with Congenital Limb Defects 1995:188). These “children’s symposia” became
an opportunity for parents to pay attention to the frank and honest voices of theirchildren that were not normally heard at home (Association of Parents of Children
with Congenital Limb Defects 1995:189).
On another front, from the late 1980s onwards various publications such as Boku
no te, o chawan taipu ya [My hands are chawan (bowl) type] (1984) and Inochi hazumu
nakamatachi [Friends full of life] (1989), began to be released by the “Parents’
Association.” These publications were texts that “presented an image of the everyday
lives of parents and children through their memoirs and essays and through the
documenting of various things children said as they were growing up” (Association of
Parents of Children with Congenital Limb Defects 1984:134), and portrayed “[children]
living with their families in the midst of ordinary local society as a completely normal
way of life” (Association of Parents of Children with Congenital Limb Defects 1989b:
106). Beginning with accounts of personal experiences from the collected writings
published regularly by local branches, many children became involved in volunteer
activities, and records of activities such as a ski camp opened as “a place for children togrow” (Association of Parents of Children with Congenital Limb Defects 1995:146) wereassembled.
In parallel to these activities based on the everyday lives of parents and children,
activities aimed at raising issues concerning genes and eugenics were also undertaken.
Specifically, these activities involved speaking out against the view that “children withdisabilities should not be born” and “families with disabled children are unhappy.”
For example, one parent of a child with a hereditary disability questioned the
movement attempting to stop the birth of children with disabilities through thepromotion of secondary preventative measures, saying, “why am I strange forintentionally giving birth to a child with a disability? ...[our family] is a very normal,
happy family. Who gets to decide whether this kind of happy family is right or wrong?”(Association of Parents of Children with Congenital Limb Defects 1995: 265-6). And
from the 1980s onwards various symposia addressing issues of heredity and eugenics
have also been held in addition to the “children’s symposia” mentioned above. “To raise[these children] is to experience their charm and the enjoyment of living together withthem, and this state of affairs is not at all “unhappy” (Association of Parents ofChildren with Congenital Limb Defects 1989a: 90). Based on their own experiences ofdaily life, these parents are demonstrating that “life with a disabled child is not
unhappy.”20

Ars Vivendi Journal No.5 (August 2013): 8-24

5 Conclusion
In this paper I have examined the development of the activism engaged in by the“Parents’ Association” and clarified the ways in which the assertions made by thisorganization have been transformed.
Looked at from the perspective of the activism developed in the 1980s, the push forthe investigation of causes in the 1970s can be seen as a movement based on a
conflation of the points of view of parents and children. For example, in the 1970s, as isindicated by statements such as “we must investigate causes for the sake of thechildren” and “it is clearly the duty of parents to view congenital limb defects as‘damage’....and to bring their causes to light” (Association of Parents of Children with
Congenital Limb Defects 1989a: 90), parents positioned themselves as victims’ family
members and were not sufficiently aware of the differences in perspective between
parents and children within families.
The fact that from the 1980s onwards the “Parents’ Association”’s activism hasdeveloped as a movement recognizing the differences in perspective between parents
and children can also be confirmed by looking at the transformation of the view of
disabilities held by these parents. Up until that time they had pursued theinvestigation of causes based on the assumption that “disabilities are somethingchildren would be better off without, something that should not exist,” but from the
1980s onwards, in contrast to this view, by adopting the perspective of the children
themselves they have come to accept the bodies of children living with disabilities as
they are. By showing society the daily lives of these children just as they are, theseparents are asserting that “life with a child who has a disability is not unhappy.”Notes[1] The “Parents’ Association” is known to many people today through Sacchan nomahou no te [Sa-chan’s Magic Hands], a picture book that has sold over 700,000 copies.
Approximately 1,400 families, mainly of children with congenital limb defects, belong
to this organization. Beginning with Ms Nobe, for this paper I conducted interviews
between August and November of 2004 with individuals who have been active in theorganization since its founding in the 1970s (the Nara branch’s Keiya Nishimura, theNagano branch’s Ichiro Nebashi, and the Ibaraki branch’s Kazue Sato). I also received
assistance in obtaining documents from the organization’s administrative staff. I would
like to express my gratitude to all of these individuals.
[2] I have already discussed the movement to expand institutions during the period of
rapid economic growth and the activities of the “National Association for Children(Persons) with Severe Physical and Intellectual Disabilities” in a separate paper (Hori2006). The movement of parents of children with severe disabilities, as can be seenfrom ideas proposed by the “National Association for Children (Persons) with Severe
Physical and Intellectual Disabilities” such as “the National Association’s threeprinciples” and “parents’ charter,” was developed while consistently impressing upon
its members the need to “ready oneself as a parent.” This movement has had a direct
influence on various implemented policies, including, for example, the 1967 revision of
the Child Welfare Act.
[3] Concerning petitions for clemency pursued by those on the parents’ side before thattime, see, for example, the journal of the “National Association for Children (Persons)with Severe Physical and Intellectual Disabilities” Ryoshin no tsudoi [Parents’21Ars Vivendi Journal No.5 (August 2013): 8-24

gathering] Tokushu -- atotatanu kono higeki [Special feature -- This tragedy withoutend] (September, 1967 Issue).
[4] Information from an interview with Akiko Nobe conducted on September 17th,2004.
[5] Information from an interview with Keiya Nishimura conducted on November 5th,
2004.
[6] Dr Kida is an advisor to the “Parents’ Association” and specialist in clinicalteratology. He was involved in Thalidomide trials as a member of the Thalidomide
recognition committee, and later continued to be active as a medical advisor to the“Ishizue” Thalidomide welfare center.
[7] For example, in data gathered in March of 1978 as part of a “Parents’ Association”
study, 53 out of 181 mothers surveyed were found to be using hormone drugs. This fact
was later reported in major newspapers (see, for example, Naze sentenijoji ni? Haha no
3 wari horumonzai fukuyou -- oya no kai jittaichosa [Why [did they become] children
with congenital defects? 30% of mothers take hormone drugs -- a study by the “Parents’
Association”] (Sankei Shinbun May 5th, 1976 morning edition).
[8] November 1st, 2004. From Kazue Sato based on data she had gathered/produced
herself. This “request document” preceded the inception of the “monitoring group” in1979 (discussed later in this paper) and therefore comes close to fully encompassing thedemands being made of the state/ministry of health in the 1970s before the ensuingchanges in the assertions of the “Parents’ Association.”[9] Information from an interview with Ichiro Nebashi conducted on November 19th,
2004. After consulting with the person in question, and in consideration of the uniquenature of hereditary issues, in this case only I have used a pseudonym to avoid
disclosing the respondent’s identity.
[10] Looking at the development of the “Parents’ Association” movement in its entirety,
it may indeed be possible to point to this movement as one possessing the typicalcharacteristics of a new social movement described by “new social movement theory.”
But the essential interest of new social movement theory, as represented by leaders inthis field such as Alain Touraine and Jurgen Habermas, has been to place new social
movements in a historical structural context (late capitalism) and understand themeaning of their formation, and as such this approach can be seen as having amacroscopic understanding of the era as its focus.
[11] January 14th 2006. Oral statement by Ms. Nobe based on the minutes of
discussions with the “National Green Grass Association.”[12] Watabe’s statement was published as an essay entitled Shinseina gimu [Sacredduty] in the “Kogo Zokkai [Lay interpretations of classical language]” column inShukan bunshun [Weekly Bunshun] (October 2nd, 1980 Issue). In this essay hereferred to the high medical costs incurred by Akahito Oonishi as a result of hishemophilia and asserted that there is a “sacred duty” to avoid giving birth to people
with hereditary disabilities.
[13] As is indicated by the “Parents’ Association”’s founding document, which statesthat “old customs and prejudices concerning ‘congenital defects, i.e. heredity,’ remainstrongly rooted, particularly in rural areas, and as a result of this children and theirfamilies undergo considerable emotional suffering” (Association of Parents of Children
with Congenital Limb Defects 1995: 341), up until this time the “Parents’ Association”
movement had developed without addressing or disapproving of prejudice anddiscrimination concerning heredity.
[14] While their number has been small, people who are not parents but individuals
with disabilities themselves who take part in the organization’s activities have existed
within the “Parents’ Association” since its founding. These individuals continue to bereferred to as “adult members” and are treated as full-fledged members of theassociation.

22

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