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Disability Movement / Studies in Japan 9: Women


Shinya Tateiwa 2010/09/06

/ 9/
translation by Midori Hiraga
proofread by Yura Okamoto


Raising Voice by Themselves

  The details of the birth of Women's Disability Movement in Japan can be found in SEYAMA Noriko's (瀬山紀子) master's thesis "Creation of Narrative and Community: Narratives of People with Disabilities", especially in the Chapter Three "Narratives and Communities of People with Disabilities". She also published an article, "How the Voice is Born: History of Women's Disability Movement" in Assertions of Disability Studies (ISHIKAWA & KURAMOTO ed. 2002). These texts present the issue quite aptly and surely should be translated into English. But as they are not yet available in English, I shall briefly summarize the women's disability movement in Japan in this section.
  One of the origins of women's movement was the movement to amend the Eugenic Protection Law I introduced in Section 1 and Section 8. It seems there was a confrontation between the feminist movement and (at least a part of) the movement of people with disabilities opposing prenatal screening and selective abortion. The controversy actually existed between the two, but it seems that the aspirations of the two sides were not exactly on the opposite ends. Women with disabilities and activist groups, in which such women were members, thought about this issue and continually made their ideas known. In 1982, the Liaison for Prevention of Harmful Revision of Eugenic Protection Law (later renamed as SOSHIREN - Voice of the Female Body (SOSHIREN――女 (わたし)からだから) was established, in which YONEZU Tomoko (米津知子 1948 - ), whom I referred to in Section 8, also participated.
  Another was that although previously, men had been the leading force and spoke out in public although there were women members in the movement, women gradually began to discuss the issues of their family or child rearing, their relationships with men or other female issues among themselves, and they also began to make statements on their own. One of such women's groups, the CP Women's Association (CP女の会), was established in 1974 originating from the women's section of "Aoi Shiba no Kai". This group engaged in a movement protesting against the news report on the suicide of a parent of a child with disability in 1987. The group also privately published a book, As a Woman, As a CP (『おんなとし て、CPとして』 1994).
  This book carries articles on hysterectomy. The discussion on hysterectomy of women with disabilities began by the "Study Section on the Issues of Disabled Women" of the National Assembly of Citizens using Wheel Chairs in 1979. A woman with CP stated that hysterectomy helped her to expand the possibilities and generally made her life better, since she did not need personal care with menstruation any more, but that the operation at present cannot be conducted safely, so there should be a system offering it on a legal basis. Some voiced opposing opinions, saying that it was denying lives of those receiving care altogether, and also noting that legalization of hysterectomy can put pressure on many disabled women to have hysterectomy though they do not want it. This conflict resulted in the establishment of a group called "Headwind (「むかい風」)", which began a discussion of sexuality of  women with disabilities.
  These developments contributed to the raise of interest in the issue, and the magazine, Let's Go to Town like a Breeze (『そよ風のように街に出よう』), which is introduced in the Section 2, made several special issues covering the problem of sexuality. In the 1980s, two books related to the magazine were published. One is a book edited by MAKIGUCHI Ichiji (牧口一二) and KAWANO Hidetada (河野 秀忠) ★01 and is called Love (ラブ) 1983), and another is edited by KISHIDA Michiko (岸田美智子) and KIM Manri (金満里) and is called I am a Woman (『私は女』 1984), which was later revised as I am a Woman: Revised (『新版私は女』 1995).
  In 1986, DPI Network of Women with Disabilities (DPI女性障害者ネットワーク) was established. ★02 This organization together with some other continued to question the Eugenic Protection Law and eugenic sterilization operations. Organizations such as SOSHIREN and DPI Network of Women with Disability first took action to abolish the Eugenic Protection Law, and succeeded, as I already mentioned in Section 8. After the law was revised and renamed from the Eugenic Protection Law into the Maternal Protection Act in 1996, the Group Demanding Apology for Eugenic Sterilization Operations (優生手術に対する謝罪を求める会) began recording the experiences of forced sterilization operations and demanding apologies for them. These organizations were small groups, and quite many members overlapped. In 2003, The Crime of the Eugenic Protection Law: Testimonies of People Deprived of Childbearing (『優生保護法が犯した罪――子どもをもつことを奪われた人々の証言』) was published. ★03
  On the one hand, there were obvious damages and crimes to be redressed, on the other there are more subtle daily lives - which are not really that far from the issue - which still continue. I hope that somebody else will write in more detail what has happened to these issues since. There are some books such as Disability Study of Sexuality (『セクシュアリティの障害学』 Kuramoto ed. 2005) I referred to in Section 5, which are written in a more academic vein and some issues (although only in Japanese) are discussed there.

People and Books on the Issue

  There are quite many books written by women with disabilities. I hope, again, that somebody else will properly introduce them and their arguments to the world. Here, I will merely offer a short description of such writers and their works. Most of those appearing below have been very active and well-known among people in the movement. Of course, there are many other women with disabilities who are active and well-known in the movement but do not write, and this is only natural. Still in Japan more books have been published by people with disabilities about themselves and the society surrounding them then in other countries, as I mentioned in Section 2. They are not academic papers, but they have their own significance. I'll introduce them below, according more or less to the authors' birth year. The length of description is not even - it tends to be longer for those authors I have written about previously.
  ◇In the 1960s, KIMURA Hiroko (木村浩子 1937 - ) self-published her books Living with My Toes (『足指に生きる』 1966) and Half of My Life (『わが半生記』 1967). Kimura has CP, and she later opened a guest house called "Earth House (「土の宿」)"in Okinawa. From the time before the term "living independently" spread in Japan, Kimura has been running the guest house and many people visited her there, and later said that meeting with her changed their lives. Kimura is also a painter, and has been actively engaged in creation of her art work. She published The Story of Okinawa Earth House (『おきなわ土の宿物語』 1995). ★04
  ◇HONDA Setsuko (本多節子 1936 -) has been in Nagano since graduating primary school. She has lived independently participating in the activities of the Nagano Branch of Aoi Shiba no Kai. She wrote her autobiography, CP: Three Decades of a Woman with DisabilityLiving Independently (『脳性マヒ、ただいま一人暮らし30年――女性障害者の生きる闘い』 2005).
  ◇IINO Chiyoko (猪野千代子 1936 - 1999) had high fever at the age of 17 and her whole body became paralyzed. Her family took care of her for 14 years until she was 31. She had hysterectomy in 1967, and entered Fuchu Nursing Center the following year. She left the center in 1973 and began living independently in a house for people using wheelchairs in Tokyo. She became the president of the Association to Regain Legs for People with Disabilities (障害者の足を奪い返す会) and led the movement arguing for rights of transportation. She self-published brochures The Way of My Life (『私の生きざま』 1976) and The Life of Home-Cared Severely Disabled People: The Decade's Struggle against the Transport Industry and the Government (『在宅重度障害者の生活――交通と行政との10年間の闘い』 1982). She also wrote an article "What it Means to be a Women for Me: Memoirs of a Physically Disabled Person" (「あたしにとって女とは何か――ある「身体障害者」の手記」 1973) which was published in Lib News: Dedicated to One Road (Mini Version) (『リブニュースこの道ひとすじミニ版』).
  ◇In the 1970s, EBARA Tazuko (箙田鶴子 1934 -), a woman with CP who also is a literary writer, published her Denunciation to God (『神への告発』 1977, paperback 1987), and Paying a Visit to the Other (『他者への旅』 1979). These books have been widely read and have influenced many people in later days; ASAKA I will write about below have mentioned Ebara, and there are also references to KIMURA in SAKAIYA's books ★05。
  ◇ MITSUI Kinuko (三井絹子 1945 -) wrote Proof of Resistance: I am not a Doll (『抵抗の証 私は人形じゃない』 2006). Mitsui had fever when she was six months old. She could walk a little when she was a child, but has been using a wheelchair since. We interviewed her about two decades ago, in February 1987. She could not speak, so she used letter board. It was Mr. Mitsui, her husband, who helped us communicate with her.★06
  Mr. MITSUI Toshiaki has been a long-time partner of Kinuko. He was born in 1948, and the couple has a daughter, Miki, born in 1979. Mitsui's book is the story of the couple and their family, a story which is closely interconnected with the story of the social movement. Mitsui family was the center of the movement in Kunitachi City, creating connections between people there.
  Kinuko was poor, lost her father, and entered an establishment for people with disabilities, Machida-so in 1965, but soon left there (she was more or less expelled). Then she entered Fuchu Nursing Center in 1968. Because of the terrible conditions in the Center, several residents began a movement against the establishment. When the center tried to relocate the members of the staff who were more considerate to the residents, the latter went on a hunger strike. During this movement, Kinuko met Toshiaki. In 1972, they began a sit-in in front of the Tokyo Metropolitan City Hall in an attempt to prevent relocation of the center. This sit-in lasted one year and nine months. A few newspapers and magazines did carry the news about their sit-in★07. However, the news coverage was not at all at the scale of the deinstitutionalization movement in Denmark. We do not need to link a movement that appeared independently to something that happened overseas - we simply need to make the public know what has happened - no matter, whether we like it or not. And this was the idea behind our book, Ars Vivendi 『生の技法』.★ 08
  Why was it decided to ignore and forget this movement? There are various reasons, but one of them is that this movement criticized the professionals in the areas of medicine and welfare. Another, as I wrote in Section 2, was that the movement was on the side of the reformists. ★09
  Still, their arguments were reasonable, although some people would not want to hear them. Below is a letter to the Chief Nurse of the Center, which was named "Complaint to the Chief Nurse" and written in 1971 (p.101).

  "People often say that I'm speaking ill of the Center. I am not. What I am trying to do is to make the existence of such institutions publicly known. The problems I talk about are not problems of the Fuchu Nursing Center only, but the problems that all such institutions in Japan commonly have. It's like a back pain. You cannot solve the problem unless you pin down why you got it in the first place. Also, why do we have to live in this segregated special society of this institution? We and the staff working here have to think about it together. Many people misunderstand that point and say that I'm just talking badly of the Center.
  Also, Ms N said it would be OK to ask a man to take care of our toilet needs if he is a close person. [...] Ms N said that we should go beyond the distinctions between men and women. Well, then, I want to ask her, why do we have separate toilets for men and women in the first place?"

  Kinuko returned to the Center, but left there in 1975, and began living with Toshiaki in Kunitachi-city of Tokyo. They received welfare benefits, established the Kunitachi Snail Association (くにたちかたつむりの会) same year, opened The Snail House (かたつむりの家) in 1983 and have helped many people to start living independently by providing a place and human resources. In 1993, they founded an organization called Life Station One-step Snail (ライフステーションワンステップかたつむり ).
  ◇HIGUCHI Keiko (樋口恵子 1951 - ). She wrote Enjoy Independent Living: Blessed with Disabilities (『エンジョイ自立生活――障害を最高の恵み として』 1998) and My 83-year-old Father: Survival from Senility (『父83歳、ボケからの生還』 2004). Born in Kochi Prefecture, she had spinal caries at an early age, and it recurred in 1963. During junior high school age she spent most of the time in bed in a facility. She entered a college in 1971, then moved to Machida city in Tokyo and began participating in disability movement. In 1986, she worked to establish the Human Care Association (ヒューマンケア協会; English page: http://www.humancare1986.jp/english.html), which is the first independent living center in Japan. Higuchi later established another independent living center, Machida Human Network (町田ヒューマンネットワーク) in Machida in 1989. Then, in 1991, she participated in the establishment of Japan Council on Independent Living Centers (JIL, 全国自立生活センター協議会; English page http://www.j-il.jp/jil.files/english/aboutjil.html) and became its president in 1995. In 1994, Higuchi was elected as the first disabled female member of Machida City Council. She proposed an amendment to the Eugenic Protection Law at the Fourth World Conference on Women in Beijing, 1995. The law was amended and renamed into the Maternal Health Protection Law in 1996. Subsequently, she ran for a parliamentary election in 2001. She was not elected, but here is a part of her speech made on the day before.

  "I have lived with disability. I grew up always being told that "the disabled are useless" or that "disability is a disease that has to be cured". But I started to think that this is the only life I have, same as everybody else, so I should be able to enjoy it with happiness and dignity. I thus started living independently in a community with my friends who also have disabilities. Here we don't have to live under care of our parents or family, we don't have to have our lives controlled by a facility, we can choose where we want to live and live there just as other human beings. We strive to create a social environment, where this would be something natural, something one does not need to fight for, and we want to work and pay the taxes from what we earn. We are challenging the idea that people with disabilities should be protected and pitied. And this is why I decided to run in this first election of the new century, so that at least one person with a disability works in the policy making institution.
  [...] I am against the policies of segregation, policies sending children with disabilities to special schools. Why? If they are raised separately, children with disabilities become special, become the objects of care. Instead, by playing, fighting each other, and learning together, children can learn about their mutual differences. This way, they learn in the early stages of their lives the basics of multiculturalism, of co-existing of people with differences. Therefore, I strongly believe that integrated education is necessary. We need certain support for that, and that support should be offered and improved. And I shall strive to establish the basis for children with differences to grow together."

  ◇SAKAIYA Junko (境屋純子 1952 - ). She wrote a book, Flying Troublemaker: Me, a Disabled, Illegitimate Child (『空飛ぶトラブルメーカー――「障害」者で私生 子の私がいて』 1992). She also wrote the history of her life from the beginning. Sakaiya was born in Takasaki City and had cerebral palsy. She entered a facility in 1960 and went to a special education school, finishing high school education at Kirigaoka Special Education School (now the University of Tsukuba Special Needs Education School for the Physically Challenged). Sakaiya began living independently in 1973. Meiji Gakuin University, which was gathering attention for accepting students using wheelchairs at the time, rejected Sakaiya's application, and subsequently she entered Wako University in 1976. It was the first time for Wako University to accept a student with disability though, and there were many problems. Sakaiya gave birth to three children from 1977 to 1984, started living apart from their father in 1991 and now lives with her third child. She has worked with ASAKA Yuho, TSUTSUMI Aiko and HIGUCHI Keiko in peer counseling and other services for people with disabilities. Asaka and Sakaiya also participate in the management of CIL Kunitachi Enjoy Center (くにたち援 助為センター) in Tokyo (at that time Sakaiya was known as Sakaiya Urara).
  ◇OSANAI Michiko (小山内美智子 1953 - ). Osanai is an activist with CP, who has been actively engaged in the movement mainly in Hokkaido since the latter half of the 1970s. She founded Sapporo Strawberry Association (札幌いちご会) and has been its president. Her main publications include such texts as: Travel Book of Sweden Written by Toes (『足指でつづったスウェーデン日記』 1981), Morning Coffee in a Wheelchair: Sex Life of People with Disabilities (『車椅子で夜明けのコーヒー――障害 者の性』 1995), Can You Become My Hands? Making Care Pleasant (『あなたは私の手になれま すか――心地よいケアを受けるために』 1997).
  ◇KIM Manri (金万里 1953 - . Her English website is available at http://www.asahi-net.or.jp/~TJ2M-SNJY/eng/kim-e.htm). In addition to the co-authored book mentioned above, Kim wrote Beginning to Live (『生きることのはじまり』 1996). She was born in Osaka, and contracted polio at the age of three. After spending four years in a hospital, she moved into a facility in 1961 and stayed there for the following decade. Kim began living independently with 24 hour attendance in 1975. She organized her Performance Troupe TAIHEN (劇団「態変」) in 1983 and has been leading the troupe until present. The poster I included in Section 1 is a poster of their performance. She gave birth to a child in 1985. In her book, she wrote how she went to a facility for people with disabilities to protest against the system employed there, and somehow ended up taking up the place by tying up herself with a wire to a desk . The riot squad stepped in and took her not to a police station or jail, but to her own office. It is a well-known episode among certain circles, exciting but also miserable (pp. 127-132). She wrote about men and children, about the Eugenic Protection Law and hysterectomy, describing how these problems became important and why they are still unsolved today, and her own opinions about these matters.★10
  ◇HASHIMOTO Misao (橋本みさお 1953 - )
  ◇TSUTSUMI Aiko (堤愛子 1954 - )
  ◇ASAKA Yuho (安積遊歩 1956 - ). She is one of the co-authors of Ars Vivendi: Sociology of Disabled People Who Left Home and Institution (under the name of ASAKA Junko). She wrote about the three decades of her life in Chapter 1 "To (Me)". She was born in Fukushima and was diagnosed with dysosteogenesis in 40 days after birth. When I met her for the first time in 1985, she was living in Kunitachi City of Tokyo Prefecture, and she still lives there today. Her major publications include Sexy Trip for Healing: I Like Myself in a Wheelchair! (『癒しのセクシー・トリップ――わたしは車イスの私が好き!』 1993), Declaring War from a Wheelchair: I Will Become a Politician so that I Can Continue Being Happy (『車椅子からの宣戦布告――私がしあわせであるために私は政治的 になる』 1999), and Super Independent Theory for Life: Any Body is Perfect (『いのちに贈る超自立論――すべ てのからだは百点満点』 2010).
  In the chapter entitled "To (Me)", Asaka wrote about her experiences such as being taken by her parents to many hospitals for operations she did not understand the need for, operations that were painful and useless, then entering a special education boarding school and the miserable existence under nurses who were too strict, and so on. There are no accounts in her text that would be a pleasant reading for those in medical or nursing industries. Still, she does not depict special education and the welfare industry in general in the positive light either. Surely, this is not the whole picture. Still, it is a fact that there is at least one person with that point of view, and, judging from my interviews of people with similar experiences, there are quite a number of people, who feel the same. (I wrote about the necessity of understanding this point in the article "About Curing" in The Practice and Experience of Clinical Sociology). Attempt to discuss this issue further leads to the discussion of "medical model" vs ...
   However, this is just one of many aspects of her narrative. An important part of her texts involves descriptions of several occasions that changed her life. Staying in the USA for half a year was one such big occasion for her, and the person who convinced her to go together (pp. 28-30) was someone (not named) whom she met in 1976 at the age of 20 (she remembers the date of that event) at a "Great Gathering under Cherry Blossoms" (as it is called by the members) organized by Fukushima Aoi Shiba no kai. She states that the life of that person also had changed dramatically. (This narrative probably refers to SUZUKI Kinue who wrote the article "And they say that living is more than enough as a job for the disabled!'" in Movement for Living Independently and Disability Culture (『自立生活運動と障害文化』 JIL, 20010501). I find this episode very interesting, and believe it is important, so I have introduced it to my students with certain enthusiasm.
  About two decades later, in 1996, Asaka gave birth to her daughter, Umi. Umi had dysosteogenesis too, so both the mother and the daughter have the same disability. NHK covered Asaka having a baby in 1996 and 1997. Asaka herself wrote about their life after Umi's birth in her second book, Declaring War from a Wheelchair: I Will Become a Politician so that I Can Continue Being Happy in 1999.
  Asaka, Higuchi and Sakaiya are the main figures who spread (if not established) peer counseling in Japan. The term "peer" here means colleagues or comrades. Peer counseling is based on the idea that people in a common situation or those who have had similar experiences can offer better counsel to each other. The common element can be being women, students, elderly, and so on, including being disabled. In 1983, before we met her, Asaka had spent half a year in the USA. In those days, Duskin provided funds for Japanese people with disabilities to study in the USA (the company is continuing its support now providing funds for a broader range of destinations★11). Asaka was inspired to spread peer counseling in her own country by her experiences in the USA. Naturally, Japanese people with disabilities had listened to each other's stories and supported each other before, but she introduced a clear conceptual frame and a method, setting time and place for the activity. Asaka worked as the section leader of peer counseling in the Human Care Association (ヒューマンケア協会 ; English page: http://www.humancare1986.jp/english.html), which (as  the members assert) was the first independent living center in Japan. (Chapter 9 of our book Ars Vivendi 『生の技法』 is about this Center, and Chapter 6 is about the Independent Living Program which does not offer peer counseling in the narrow sense of the word but is based on the idea.) Peer Counseling spread all over Japan quite fast, although some people appreciate it more and some less. Asaka co-edited a book with NOGAMI Haruko, The Strategy Called Peer Counseling (『ピア・カウンセリングという名の戦略』) 1999★12 that is available at general book stores.
  ◇TSUNODA Mariko (津野田真理子 1957 - ). Tsunoda wrote a book entitled Let Yourself Immerse in Mariko's Color: When a Disabled Woman Lives in a Town (『マリコいろにそまれ――障害者の女が街で生きる時』 1983).
Tsunoda is from Tokyo and had CP. This book is a collection of her articles published in the magazine Features of Stories (話の特集). Tsunoda has been conducting social activities on her own, without participating in any organizations. There are many texts written by such independent writers, and many by people involved in activism groups. I would like to introduce some of them in future★13.

★Notes are available in Japanese only

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