Don’t
Hesitate to Trouble Them (Them means able bodied caregivers or able body people
around the disabled).
Opposition
towards New Prenatal Diagnostic Test
Disabled
people, “Let’s go out to roam around
the town like a breeze.” If
there is anyone who gets in the way, “do not hesitate to be a burden to him/her”.
Independence does not mean “solitude.” The disabled need “people around” to be
independent.
In the 1970’s, when the movement opposing compulsory
special school education was active, I voluntarily came back to Tokyo from
Kyoto for the care of my mother-in-law who had cancer. I indulged in the life
solely assuming the expected role of “caring”, going back and forth between the
hospital and home. I was locked up in my house but did not question the life of
“housewife-like situation” at all.
One day, a flyer blown by the wind had
dropped in front of the hospital and caught my attention. It was an ad for the
movie, “Goodbye CP (cerebral palsy)”. It aroused my interest and I felt like seeing
the film. It was a movie produced by Shippu Production in 1972, depicting a
handicapped person, unable to walk on two feet, but getting around in the town
on knees with his body twisting. It was a film exposing something “different”
to the light of day in an ordinary “homogenous” town. The guy who walked on the street is
Hiroshi Yokota, chairman of Kanagawa branch of Aoi-shiba-no-kai1). Director: Kazuo
Hara.
I participated in the student
group activities to care for the disabled after being asked to help “T” with
whom I met for the first time at the Chapel Hour at Doshihsa University’s lecture
program open to the public.
Before long, I began going
out with the disabled as a member of the group who supported the independency
of disabled by providing them with 24-hour care in shifts. It was normal in
those days for the Japan Railways (public railway system prior to becoming a
private enterprise) to reject disabled people to board trains and restaurants not
allowing their admission. In such cases, I often got furious and had serious arguments
with the customer services there. But it was always the disabled that soothed
me and dismissed those incidents casually by saying, “Don’t get so upset. Take
it easy.”
I once helped a disabled
woman who started living alone in the local area with strong determination to “move
out from home and not wanting to live in institutions.” I helped her for
several years and got involved in her personal life, during which time she got
married and had a child. In those days the remnants of students’ movement were
still around. The students in the group worked diligently and were very gentle.
They were somewhat weird but merry.
Mr. Koichi Yokotsuka, the
first chairman of Aoi-shiba-no-kai, said, “Being thoughtful is not to feel
reserved towards able-bodied people. We, as physically challenged with CP, must
be thoughtful but at the same time be assertive. In some
cases, we have to use able-bodied caregivers to the fullest extent even if we
are aware it will exhaust them and possibly lead to their collapse.” (“Mother, don’t kill me.” 1975, by Suzusawa
Shoten.)
He is said to love
Shinran’s2) words in “Tanni
Sho”, “よきひとのおほせをかふりて信じるほかに別の子細なきなり (I simply believe my
mentor Honen’s words, and nothing else, “Do pray with, Nenbutsu, Buddhist chants and be saved by Amitabha, a celestial
Buddha”) ” He probably wanted to
reflect relationship between Shinran and Honen”3) over the
extremely strained relationship between the handicapped and their caregivers.
I often took my elementary-school
daughter at the time to this group’s activities. One day she asked me while we
were taking a bath, “Why did God produce disabled people?” I answered, “People
with disabilities are born in fixed ratio in the same way people with other
characteristics are born.” It is natural that there are strong people, weak
people, and people different from you in the world. Besides, it is not so unhappy
to be disabled.” “Is that so…” my daughter answered pondering deeply over my
words.
She is now in her 40’s and she had her
first child at the age of 41. She gave birth to a baby who happened to come
after 15 years of marriage. In spite of her age, she rejected prenatal diagnosis by amniocentesis. And when her child was a year
and a half, she got a divorce. As a single mother, she lives a struggling life
with her two year and a half daughter who is getting more and more assertive.
Eugenic Protection Law’s revision bill was laid
on the table in 1972 and 1973, trying to eliminate “the economic status condition3ª”
to legal abortion and include “fetus
status condition4)”. “However, due to the strong opposition movement
by women and the disabled advocates, the bill was shelved and finally damped in
1974.”
10 years later, in 1982, a Diet member, Masakuni
Murakami of the Liberal Democratic Party then (a member of Seicho-No-Ie (House
of Growth), a world’s largest New Thought Group) tried to submit the revision bill
to the Diet again, wishing to eliminate “economic status condition” without
referring to “fetus status condition”. However, because of nationwide
opposition movements and local governments’ adoption of petitions, majority of
Diet members took cautious stance and judged the bill “ahead of time prior to
legalization” and in March 1983, the idea of submitting the bill was given up.
Then why didn’t 1982’s bill to revise Eugenic
Protection Law refer to “fetus status condition”? That is because the revised
Maternal and Child Health Act had already included this “fetus status” provision.
The preparation to revise the Maternal and Child Act started in 1976 and
steadily and successfully they pulled of revision of this law.
It turned out that the
original purpose to revise the Maternal and Child Health Act is as mentioned in
the Article One of Eugenic
Protection Law – “to prevent birth of inferior descendants from
the eugenic point of view, and to protect life and health of mother, as well.” The
revision was bolstered by the following governmental policy in late 70’s as
well – “Vision of Enhancement of Family Foundation” – mainly asserted by the late
Prime Minister Masayoshi Ohira. On top of that, another purpose for the
revision of Maternal and Child Health Act was to divide the coalition of women
and the disabled advocates by undertaking the “economic status condition” and “fetus
status conditions” separately by different laws.
And
now, new compulsory prenatal diagnosis is about to be legalized in Japan. “In
October this year, some 10 medical facilities will start clinical tests of new
prenatal diagnosis by which three chromosomal abnormalities including Down Syndrome
can be identified with high precision from pregnant women’s blood. Test is
aimed to offer pregnant women at age of 35 and older from their 10th
week of pregnancy. In the case of Down Syndrome, its abnormalities can be
identified with 99.1% precision. Since unlike the conventional test method,
having blood test in early pregnancy alone can conduct diagnosis, which creates
concerns for inducing abortion, leading to the ‘selection of life.’ The backdrop
of introduction of new test is rapidly increasing in cases of late marriages
and late childbearing. According to Population Survey Report in 2011, average
first birth age is 30 years old and older. One forth of newly born babies in
2011 bore from advanced-aged pregnant women.” (Tokyo Shin bun)
I also
suspect that there is a fear of radiation concerning the
Fukushima Daiichi Power Plant Explosion brought about by Great Eastern Japan Earthquake. Under the
circumstances, the weakest “fetus” is obliged to be the biggest sacrifice. Furthermore,
those who are forced to make this heavy decision are women.
In the history of women’s liberation movements, women claimed
their right for abortion as the right of self-determination, with slogan, “‛ to
breed or not’ is women’s choice,” while disabled people shouted, “Mother, don’t
kill me!” concerning “fetus status condition.” (I do want to say “Do not flee,
men!” as enantiosis.) Why did women and the disabled have to be at loggerhead? In the past two opposition movements towards revision
of Eugenic Protection Law, no right answer was given. Current new compulsory
prenatal diagnosis legalization move will give heavier burden to day-to -day
life of women and the disabled in the context of integration of administrative
and science/ medical organization.
On December 23, 2012,
gatherings will be held in Tokyo and Osaka related to new compulsory prenatal diagnosis： “Let’s talk about new prenatal diagnosis test” in Tokyo, organized
by Voice from High-Risk Women/ Soshiren “From Women’s (Our) Body” “Is it Good
thing to know whether or not your fetus has ‘disabilities’ just by blood test?”
in Osaka, organized by Reproduction Medicine and Discrimination (picture-card
shows project), co-organized by Kyoto Parental Group of Down Syndrome Children “Triangle”.
On December 16th
in Japan, the general election of the Lower House ended. The result was as
assumed. What a disaster! Just like a period of final days of Weimar Republic, I
am afraid that based on concept of eugenics, Japan is steadily proceeding to the
road to fascism. Whenever I think of the future of Japanese young people, I get
profoundly depressed.
Translator’s notes
1.
Aoi-shiba- no-kai: A society of people with cerebral palsy who aim to be free from restriction to remain at home and
live not in an institution for the disabled but live independently in town with
the help of caregivers.
2.
Shinran： (1173
–1263) was a Japanese Buddhist monk, who was born in Kyoto at the turbulent
close of the Heian period and lived during the Kamakura period. Shinran was a
pupil of Honen and the founder of what ultimately became the Jodo Shinshu sect in Japan.
(from
Wikipedia: http://en.wikipedia.org/wiki/Shinran)
3.
Honen: (1133 –1212) is the religious reformer and
founder of the first independent branch of Japanese Pure Land Buddism called Jōdo-shū ("The Pure Land School"). Hōnen
became a monk of the Tendai sect at an early age, but grew disaffected, and sought an
approach to Buddhism that anyone could follow, even during the perceived Age of Darma Decline. He
taught people to recite the Buddha’s name or nembutsu to be saved.
(from
Wikipedia: http://en.wikipedia.org/wiki/Hōnen)
4.
“the economic status conditionª”
/ 5. “fetus status condition”
The
points of revision bill in 1972, and 73 were the elimination of the “economic status” from the possible
conditions of abortion, and the insertion of “fetus status” provision in this
law. For women’s right advocates, elimination of “economic status” means
reducing women’s self decision right to breed or not to breed. For the
disabled, insertion of additional “fetus status” provision means possible
increase of abortion of fetus having abnormalities in expanded lists of
disorders.
Original article by Mine Yagi on the WAN website (Dec. 20, 2012)
http://wan.or.jp/reading/?p=8639
Translated and adapted by Y. Hayami.
