Body in our Time
- Discourses, Movements, and Policies -
Application for Grants-in-Aid for Scientific Research (A) (draft)
Wording responsibility:
Shin'ya Tateiwa Date of submission: 2011/11 Japanese Page
ĄĄ Body in our Time - Discourses, Movements, and Policies -
ĄĄ2 Objective of research (outline):
Disabilities and illnesses make people live through differences,
passing through the changes that happen to their bodies.
Most of the events that happened with or around such people during the
last 50 years or so has been neither observed nor documented.
The period of several years from now may be the last opportunity to do
it.
Using the force of the most energetic researchers in the field, backed
up by participation of graduate students and graduates, I shall
organize this research project and clarify the following points.
T: What has happened regarding the issues of naming of disabilities,
expressing them and finding their causes.
U: The process of creation and usage of technology and techniques for
curing or compensating disabilities, the positive and negative effects
of the same, and the discussion for and against them.
V: The detailed history of conflicts within social movements, and the
claims and ideas, which emerged from them.
W: The concrete images and the overall picture of the policies, which
at times were developed disregarding movements and claims made there,
and which came to have a certain influence on them later.
X: The discourse and the facts related to care - which has always been
coupled with policies and movements, has in general been viewed in the
affirmative light, has sometimes become the battleground of struggles
for leadership, and has been provided (or not provided) in various
forms, - as well as the changes the lives of people with disabilities
underwent under the influence of the changing forms of care and the
present situation.
ĄĄ2 Objective of the research:
(1) Background / history Although the events serving as the subject of this research project
happened not so long ago, in about 10 years there will be nobody to get
verbal evidence from. At the same time, the importance of the
research on the history of events and of the discourse around
disabilities
and illnesses in our country is widely recognized and such research has
already been
conducted from many angles, but a large part is still left unexplored,
and rthe esearch is generally lacking depth.
One reason for it is the limited time and resources available to
researchers.
Since the situation cannot be changed at once, to achieve this task I
shall establish a system of research support and, based on it, use the
forces of a number of researchers.
I shall create a framework of connections among the most promising new
researchers, people who have been actively conducting research in
the recent years, authoring or co-authoring books and papers on the
issues
that shall be addressed by this project, obtain opinions, advice, and
requests from them, at the same time establishing positions for
graduate students and graduates to take part in the research, organize
and publish the data and the results, providing information to
researchers
shouldering an assignment within the project, those cooperating with it
and other people, who are interested in the subject,
helping all related to the project conduct research and make its
results widely known.
I am strongly convinced that it is both necessary and meaningful.
(2) What shall be done [0] The first issue that is both necessary and possible in the framework of this project is simply to uncover
and document the fundamental and concrete facts,
It is necessary to gather historical materials and data so that they do
not become dispersed and lost, documenting the memories that do not yet
exist as texts.
And we shall also establish the system of storage and distribution in
the forms of digital books or other electronic media of some documents
that are hard to get hold of at the present time.
[I Knowledge and its representations] We shall conduct research and analysis of the
discussions and practice of recognizing disability,
naming it (or being given a name), and searching for its causes.
There is a view that the acts of discovering an illness and naming it
(which at the same time make people who are given such names objects of
medical practice) are the acts of "medicalization" - a process, whereby
professionals and specialists invade our life space, but the reality is
not so simple.
Firstly, in Japan there have been practically no academic attempts to
look into the actual process of medicalization as it happened in this country.
Secondly, for any individual there are (at the very least unavoidable)
pressing circumstances urging him to take the initiative in both
directions: to demand for a disability name or a diagnosis on the one
hand, and to avoid them on the other.
And there is almost no research conducted from this viewpoint.
We shall look into drug-induced sufferings, death from overwork, and
overwork-related suicide in the past and at present, analyze ways the
causes were and are investigated and the methods used for official recognition,
address the positive aspects of (and also the always present concerns
about) acquiring the various disease names believed to come under the
label of developmental disability, and also into what has been said and
done regarding the pros and cons of learning about the child's
disability before his or her birth.
For some of the issues, it would be beneficial for all to have a
society that does not require a proof of an illness or a disability in
some situations at least, and it will surely be possible to demonstrate
a possibility for such a society to exist.
[II Technology and techniques] There are parts of technology
that have been discovered / invented in daily lives, and there is also
a large amount of technology that is a product of science in the narrow
sense of the term, and yet other technologies, which are a mixture of
both.
In the case of the first, the origins and the history of their development
and use are not usually documented.
In the case of the second, as science related to technology essentially
strives to be constructive and always look ahead, the past is rarely
remembered or documented.
One aspect most diligently forgotten is failure.
This way, the various technologies supporting our lives and living
environments are disappearing from our memories together with the good
and the bad they have given us.
However - also in order to help us use various technologies from now on
- we surely need to remember.
And thus we shall trace the history of
artificial dialysis
- its equipment and the institutions ordaining its use - of
respirators, and of other medical
equipment, looking into its introduction to the homes of people with
disabilities, and of the changes in the technologies related to
communication of people with motion, hearing, and vision impairments.
There have been various "treatments" such as those for
cerebral palsy and other disabilities,
which subsequently were found to be completely useless, some treatments
for other incurable diseases, which do not exist anymore but raised
high hopes at the time of their announcement (and quickly disappointed
all of those who hoped).
On the other hand, there was some criticism such as that toward
artificial cochlea, criticism informed by
concerns regarding the free choice of language and culture rather than the
problem of technological effectiveness.
This project shall identify these trends and analyze them. [III Movement and (or its) ideology] Some research on social
activism regarding various disabilities and illnesses and also on the
organizations and the people who were most active in the movements has
already been made and some texts have been already published, but what
has been done is less than ten percent of what has to be done.
We shall make a thorough study of both the data accumulated during the
last 25 years or so in the course of our research, scour for new
documents related, and ensure a worthy output.
One issue we shall direct our attention to is the links between the
policies and ideas regarding surrounding people with disabilities and the various
social activism that emerged since the end of the 1960s.
In the 1960s, there was a shift enabling people with disabilities to
change their position within the society and voice their opinions, and
even among the researchers and groups of professionals there have been
some, who questioned their professional attitude and actions (ĻX).
One issue that cannot be underestimated here is the confrontation that
existed among the left-wingers.
Claims of both parties in the dispute (or at least of one of them),
even when both agree on the necessity of social reforms, sometimes run
to "extremes".
For example, some have argued that "there is no need to cure" (even if
a cure is available) (ĻI-II).
When a claim is extreme, it is often easy to discern its weak points,
but at the same time arguments made in the state of fierce
confrontation tend to push the very limits of what can be said on the
issue - and thus discourse in Japan often went farther, surpassing that
of the West.
We shall look into the history of the movements and ideologies, which
were created there, and attempt to create a theory to encompass them.
Moreover, in order to make a comparative examination of the movements and
arguments and also their backgrounds - which often differ among countries -
we shall work collaboratively with researchers from the United Kingdom,
South Korea, and other countries, facilitate discussions and make our
results public in many languages.
[IV Politics and life] We shall bring the research regarding policies related to the above up to date. Although,
compared with the issues of II and III, a larger amount of papers,
publications, and other research introducing the trends in various
policies has appeared, there are also areas such as trends of policies
regarding "specified diseases", for which there has been close to no
research conducted by social science.
Moreover, even in the area of care, which is often discussed now, there
is very little research that attempts to create a history of the complex changes of the system of
care for people with disabilities, and even regarding the policies for
the elderly, which are being created and improved at a comparatively
quick pace, there is not enough research on the early stages of the
original care systems run by municipalities.
[V The era of care?] First and foremost, it is
necessary to analyze the discourse regarding care using the methodology
available in social sciences.
Secondly, we need to identify who bears what burden (and who avoids bearing burdens altogether).
Another important aspect is the struggles for work and fights for
leadership.
Predictably, all industries create narratives that suit them best - or, just as conveniently, stay silent.
The actual state of affairs is quite complex and difficult to discern
from the outside. Although there are some brilliant texts such as
A Midwife's Postwar (Michiko Obayashi,
1989), research that could only have been created at that point of
time, these texts are truly scarce,
while these conflicts, such as the ongoing struggle for the role of
provider of "medical care" of phlegm suction, often become matters of
life and death.
At the same time, in the private sector many organizations and
mechanisms providing care have been created and developed for the last
25 years or so - often with users taking the lead.
And, although there is some research on nonprofit organizations
providing care to the elderly, for quite a long time now there has been
no research offering comprehensive understanding of "Independent Living Centers".
One of the reasons is that such research cannot be undertaken by
individuals, and this project shall be useful here by having a number
of researchers participating.
(3) Significance One of the roles of science is to document.
In this sense, research on the above issues is only possible now.
There are already many people, who passed away after we started
our research,
and although there are many people, who would like to share what they
know with the world, few have the resources to put their knowledge into
writing and make it available to the general public.
Firstly, it is not fair.
And, secondly, it is truly a pity.
Which brings us to the second role of this project and science in
general: to be practical and useful for the people.
People rely on technology, and to make it possible there is a need for
specialists, for the money, for the governments, and also - in order to
be able to find what we need and to use it most effectively - we also
need to engage in social activism, get involved in certain movements
ourselves.
How should we conceptualize ourselves and our bodies, how should we use
technology, approach governments, and utilize people and organizations?
To find answers to these questions, we need to know what has happened
in the past regarding these issues, what kinds of ideas and practices have been
created and used, what difficulties have been faced. And to offer this
knowledge is yet another role of this research project.
Especially the research of IV and V shall give concrete answers
regarding policies we shall need to choose in the future.
Another contribution to expect is a theoretical one.
This project shall look into the actual state of affairs in Japan
regarding such social phenomena referred to in sociology as
"categorization", "medicalization" and "rule of specialists", at the
same time examining what and to what extent can be described using
these words.
At the same time, based on the opinions created by social activism of
people with disabilities and also on the scientific framework of
disability studies, this research shall address the problem of how we
should come to terms with the argument made by both that "people with
disabilities are not sick", shall look into the so-called
"social model"
and examine the context it should be understood in, analyzing these problems and reaching certain conclusions.
This research is also significant in the sense that it shall be
collaborative.
The fieldwork and the research in the field has so far been in the
hands of individual researchers, and for that reason only a small part
of what had to be done has been accomplished.
There actually are some researchers with both the abilities and ample track
record, for whom academic posts became an obstacle keeping them from
active research.
This project shall unite graduate students and others with more time
available and more eagerness than such researchers, establish and
maintain a system on a day-to-day basis to support collection, editing,
and publishing of information, enabling us to bring light to the
issues and problems, which cannot be accessed by individual research.
All facts and information obtained will be released on the homepage and
made available for everyone to use.
The speed of both the research and of the publication of its results shall be
accelerated to the full in order to create a large body of research
results as quickly as possible.
And this system shall enable us to disseminate information about our
research overseas on a constant basis.
A paper shall be published in every issue of the monthly journal with
papers mainly in English that was founded in 2010. The project shall
also further promote cooperation with
Colin Barnes
(the United Kingdom),
Arthur Frank
(California),
Jo Hanjin
(South Korea), and
Pam Smith
(the United Kingdom).
ĄĄ Research plan and method
Outline
An organization enabling and facilitating the research of I - V
shall be established.
Researchers shouldering an assignment within the project and those
cooperating in it shall be also busily engaged, working in academia or
in the industries, thus they shall use the resources and the results
yielded by the project at the same time influencing the direction
it shall take.
Discussing the directions with them, graduate students, fellows of the
Society for the Promotion of Science, etc. who have been eagerly
spending their time doing research up to now, shall conduct interviews,
make them available as texts, collect data, edit and publish it, and
the system shall ensure cooperation between the students and the senior
staff.
A part of the research shall be published under joint authorship.
With this organization as our base, we shall collect and add to the
already accumulated archive a large amount of other data that would
have been scattered and lost otherwise.
We shall conduct interviews (some in a public setting) of the parties
involved and also conduct questionnaire surveys of the related
organizations.
When consent can be obtained, the records shall be added to the
archive.
Constantly exchanging information and opinions with the overseas
researchers, we shall promptly disseminate the numerous results of our
research to a wide audience.
A part of them shall be published in a journal with papers mainly in
English, which we plan to publish on quarterly basis.
At least 15 publications shall be issued during the project period.
As of the 2011 academic year, there is quite a large
number of researchers participating in the planning of this project,
but this number is even insufficient, compared with the amount of work
that has to be done.
In order to build links between people and reinforce the activities, a
well-balanced system facilitating all the aspects of the research has
to be established.
Interviews and their documentation, collection and editing of data
shall be mainly conducted by graduate students and fellows of the Japan
Society for the Promotion of Science, with constant guidance of and
communication with the representative of the research and the
researchers given assignments within the project, resulting in a large part of
the research being published as joint.
Researchers shouldering assignments within the project and those
cooperating with us shall not only offer their cooperation, but also
serve as important destinations, to which we shall offer the materials
(not including the funds) and results of the research, and reaction we
receive from them shall guide us in the choice of the next steps.
On the basis of the organization described above, we shall collect the
dispersed data, conduct interviews of individuals and surveys of
various corporate bodies.
When consent can be obtained, the records shall be added to the archive
and published.
To some extent, the direction of the research shall be influenced by
individual visions of the researchers themselves, but we shall
systematically promote the research on at least the points below.
During this academic year, we shall start with publishing a book from Misuzu
Shobo that shall describe the significance of this research and partly
examine the issues stated in I.
We shall translate papers regarding the issues stated in III into
English and Korean and publish them in journals, etc.
Ą [I Knowledge and representation] A number of
disabilities and illnesses has been "discovered" during the last
several decades, becoming common knowledge in the society.
This trend is often regarded as "medicalization" and described for
example as invasion of scientific knowledge into our living space.
This view accurately describes roughly the half of the actual state of
affairs, but not the whole.
Our project shall offer a comprehensive understanding of the events
comprising the acts of naming a condition and also of explaining its
causes. It is unavoidable that in searches for responsible parties, in
demands for compensations for public hazards or accidents at work, in
debates over the existence or nonexistence and the gravity of damage,
there are often disputes regarding the causes and the facts to be
officially recognized.
But, even though we cannot dispense with such disputes altogether, it would have
been better, if we could somehow lessen the burden they become for all
concerned.
For example, these disputes force people to tell about the tragic
aspects of their disabilities or illnesses.
Is there no other way?
By conducting research and describing the events that have happened
around for example
Minamata disease,
AIDS due to transfusion of HIV-infected blood products
or hepatitis C, we shall lay the fundament that could help us find an answer to this question.
For example,
Association of Parents of Children with Congenital Physical Disabilities(1975-)
during the early period of it activities, which was the time of heated debates
over environmental pollution, voiced skepticism about environmental
factors and started a campaign against inquiries into causes.
The aim of those searching for causes in environmental pollution was
none other than eradicating disability altogether.
But for those, who already had a child with a disability living right
next to them, to look upon disability in a negative light was not at
all a natural choice.
And that is one of the problems that need addressing.
This debate was not the first of its kind.
For example, when certain research showed that
muscular dystrophy is partially genetic,
some were arguing that the society should know about it, while some
took a more cautious approach, and the conflict resulted in a split in the organization that shouldered the movement.
Later there was a discussion regarding genetic testing.
We shall trace the developments of both the thought and the policies
revolving around this issue by finding and analyzing publications that
are hard to get hold of at present and also by interviewing
Samon Ishikawa
(1937-) and others. On the other hand, sometimes individuals welcome the names of
disabilities and illnesses that are newly attributed to them (often together with methods of coping, etc.)
But at the same time some point out the dangers of naming a condition,
of making it an object of medical expertise, and such was the case of
"(Hyperfunctional) autism", and "Asperger's syndrome".
Another important trend is the medicalization of
suicide
(and its causes).
The individuals themselves were exempted from the responsibility and
preventive measures were taken, but the responsibility of the family as
to the discovery of the illness and the subsequent care increased.
Medical opinion has now become necessary to officially recognize death
from overwork as a work-related accident.
If one is to claim that overwork caused the illness resulting in
someone's death, this procedure is in fact necessary, but it inevitably
involves long battles over what to accept as facts and it also requires medical
judgment.
In what terms should it be conceptualized?
This is an object of theoretical examination, but we cannot even start
on it, if we have no facts to base our theory on.
Nobuyuki Fujiwara and his group
shall conduct this research with graduate students, who have been doing
the research on this issue, participating in the activities of
the "Association of Family Members of Those who Died from Overwork".
[II Technology and techniques]
We shall clarify the course of events that eventually led to public funds being used to cover hemodialysis
(funds of Medical Rehabilitation Service for the Adult Handicapped were
appropriated for this purpose in 1972) and the later developments.
An organization that greatly influenced the movement is the "Nationwide
Kidney Disease Council (Zenjinkyo)" (1971-).
Also, there is a number of processes that resulted in
respirators, which previously had a
status of "medical equipment" and were only available at hospitals,
coming to be used at homes.
One was the campaign to move hospitalized children back to their homes,
another to make respirators available to be used in nursery schools and
schools. One organization involved in the movement is the
Association of Parents of Children Using Respirators (Bakubaku Association)
(1990-).
We will assemble the printed matter already in our disposal as a
database, and also interview such important figures of the movement as
Miyoko Hiramoto, Ayumu Hiramoto, Midori Orita,
Chitose Ondo, etc. Other important trends are of people with muscular dystrophy,
etc., who started living independently and created systems to support
their lives, and also of the
Ventilator Users Network
that has been active since 1990. We shall look into this movement interviewing such figures as
Kimiyo Sato
and his group.
Also, as there are important differences in the situation with this
issue among countries (Europe and the U.S. are actually lagging
behind), we shall make an international comparison and attempt to
discover the context, in which these differences arose.
The research in the directions stated above shall prove indispensable
in order to envisage the future of medical care and welfare (especially
that for the elderly, which is usually thought of as requiring large
sums).
We shall also take over and further promote the research within
the framework of the project of Grant-in-Aid Scientific Research of the
New Areas of Science,
"Ways of Communication by Bodies that Differ: Information, Communication, and Disability"
(academic years 2008 to 2010), regarding development and popularization
of the appliances for communication, and also human and social systems
promoting the same - another area that has largely been left
unexplored.
We shall also address the problem of conversion of text for visually
impaired to digital data in terms of recent popularization of digital
books.
Moreover, we shall continue the research concerning communication
technology, writing its history starting from people simply
interpreting the movements of the body, later moving on to methods
using dial plates or PCs, and recently to usage of brain waves and
cerebral blood flow. We shall draw a holistic picture of the practice
and the institutions both past and present, linking the findings to a
discussion of the future - as it can be envisaged at the present stage.
The research in this area shall be promoted further by a scholar of
history of science,
Yoko Matsubara, who has led the research
on technologies of communication between differing bodies and links
between technology and mechanisms. She shall work in collaboration with
a group led by
Norihito Sakamoto, with cooperation of
Jun Ishikawa,
Ryoji Hoshika, and
Satoshi Fukushima.
Although technology and mechanisms are generally looked upon in the
affirmative light, some of them invited discussion about whether they
should have been invented at all.
For example, there have been debates on the issue of
artificial cochlea
not only in Japan but also in other countries, and the parties
debating have not reached any consensus yet.
There are also debates on the usability of cures and medicines for
mental disorders and illnesses, and recently on the medicine for people
with developmental disabilities.
This is closely related to the recent debate over
"enhancement", and although several critical works have appeared, there has been no
research in the social sciences on its appearance and popularization.
We shall address the issues involving the hearing-impaired by
cooperating with graduate students working under Seigo Ueno, the author of
The Lone Creole
(2003)
and other books.
Sometimes people, whose work is to cure, (when they decide that the
condition is incurable) recommend "acceptance" of the disability.
Akiko Tajima, who has published such texts as
Reconsideration of Acceptance of Disabilities
(2009) and her group shall look into the discourse related to rehabilitation and medical care, especially into the work of Haruo Akimoto (1906-2007),
who at the same time is an important figure that has to be taken into
consideration when conducting research on III, and Satoshi Ueda
(1932-). [III Movement and (its) ideology] Since the 1970s, especially in
the disabled movement, there has been an intense confrontation within
the forces of the left between the Japan Communist Party and organizations
close to it on the one hand (ŋ) , and forces opposing it on the other
(Ā), which, among other things, resulted in a heated struggle regarding
the education of physically and mentally handicapped children.
ŋ's camp is comprised of such organizations as
"National Study Group for Problems of People with Disabilities (Zenshoken)"
(1968-)
"National Alliance Protecting the Rights and Lives of People with Disabilities (Shozenkyo)"
(1967-) and "National Workshops Alliance (Kyosakuren)" (1977-). Organizations representative of ŋ are
"National Disabled Liberation Movement (Zenshoren)"
(1976-)
"National Liaison Committee for Inclusion of Children with Disabilities in Regular Schools
(1981-)
"National Union of Communities Fighting against Discrimination (Kyodoren)"
(1984-)
"National Union of People with "Mental Diseases""
(1974-), etc. This confrontation also largely influenced scholarship and
science.
At least at some point of time in the academic societies and the
industries revolving around psychiatric care, clinical psychology, etc
attempts were made to question the role and the position of scientists.
And an important point that cannot be overemphasized is that the side of
ŋ that was criticized was also arguing for "reforms".
And that is one of the reasons Ā put forth some truly "extreme"
arguments regarding the issues to be addressed in I and II.
We shall analyze the arguments and the practice of both of the camps.
Although differences in opinions still exist, several nationwide
organizations promoting social reforms for people with disabilities
were established especially after the 1980:
"DPI Japan Council"
(established in 1986 and largely inheriting the ideas of Ā)
"Japan Council on Disability (JD)"
(1993-),
"Japan Disability Forum (JDF)"
(2004-), etc.
Power relationships have also changed somewhat.
The largest groups are the time-honored associations of parents and
other people related to those with disabilities and in that sense there
has been no change, but in terms of legitimacy of the claims made,
groups that originated in the 1970s and later and had for a long time been in
the minority are now superior, appearing in the forefront of
negotiations and policy struggles. One example is the "Alliance for
Promotion of Institutional Reform for the Disabled" that was
established in 2009 partly due to the change of government that
happened at the time.
In order to gain footing in the fluid present and to envisage the
future developments, we will attempt to draw a comprehensive picture of
the past.
Information regarding the above shall be collected and analyzed.
Chihoko Aoki will
continue her research on Kyodoren. We shall secure cooperation of
Yuri Yoshimura
and her group. Interviews of
Toshio Kusunoki
(1944-),
Eiko Nagano (1953-), Shuhei Ota (1957-)
and others will be conducted.
Some interviews will be made in a public setting.
We shall also invite researchers from South Korea, United Kingdom, and
other countries to take part in the research and analyze similarities
and differences among the movements in different countries, which is a
subject already brought up in such texts as Disability Movements and Creation of Values: a Comparison of Japan and United Kingdom by
Koichiro Tanaka.
We shall discuss the implication of "reflexivity", which is trend among
specialists not only in Japan, on the basis of such research as that of
Akiko Mishima, the author of
The "Science" of Social Welfare Studies: Are Social Workers Specialists?
(2007).
There are individual movements arguing for problems of particular
disabilities and illnesses, and also regionally bound movements.
For example the "National Hemophilia Friends' Association (Zen'yu)"
(1967-) has been established as a nationwide association of people with
hemophilia,
encompassing the interests of the healthcare workers, the
pharmaceutical companies, and the patients (or their families), but as for
the problem of AIDS due to transfusion of HIV-infected blood products,
the reciprocal relationships that had existed there broke down and the
association is at present inactive, though
there are some developments that may lead to its revival.
Kentaro Kitamura, who has been actively involved in the research and the movement itself shall take charge of the research in this area.
For regional movements and organizations, we shall further develop the research of
Yo Tsuchiya's group in the Tohoku Region and
Sachiko Yamashita's group in the Kansai Region.
[IV Politics and life] As is often said, especially the period
after the 1980s was the time of moving from facilities to the
community, and also the time aptly summarized by the slogan "from cure
to care", the time of cooperation between people of various
occupations, and the time of self-determination by people with
disabilities.
However, the reality was not so simple.
It actually was a complex process, for which all of the above served as
parts of a bigger whole.
Josuke Amada
shall supervise a group of researchers already actively involved in
the field of contemporary history of the policies for the elderly and
people with disabilities, and on the basis of the already accumulated
data and theory shall offer a comprehensive view of the issue.
As can be seen in the example of de-hospitalization of people with
mental disabilities, very complex processes comprised all of the
tendencies representative of the period.
And the subject is truly difficult to cover, since there has been no
research in the social sciences on people who lived and / or worked in
mental hospitals.
This area of inquiry shall be shouldered by
Tamio Sueyasu, who has been involved in both practice and policy-making for psychiatric care together with several promising new researchers.
Another unaddressed issue is the birth of such primarily administrative categories as "specified diseases" and
"nanbyo",
the system of policies surrounding them and the actual content those
categories are filled by. Even in the case of people with
ALS,only the outline has been drawn in such texts as Tateiwa's
ALS
(2004) etc.
Also, people with many other similar disabilities, for example, people with
muscular dystrophy develop the symptoms
quite early, making it hard to treat them as one category.
And there also are movements to heighten the social recognition of
other rare or not widely known illnesses and disabilities (ĻI) and to
include them in the category of specified diseases.
There are graduate students who research (at the same time having) "Stevens-Johnson syndrome (SJS)" and
"complex regional pain syndrome (CRPS)".
Furthermore, although at last a number of case studies of lives of those
living on the borderline sometimes able and sometimes unable to use the
care system (ĻV), those who are tossed about at the mercy of policies
sometimes also trying to change them have appeared, the whole picture
encompassing such aspects as differences between communities and forms
of residence is not yet clear. We shall address this issue with the
help of Tomoki Ito, the author of
"Theory of Self-made Tales of Self-help Groups" (2009), and Kaori Muto, who has been working with people with
Huntington's disease
and organizations related to them.
[V The era of care?] Due
to the lack of policies and also certain inducement from the
government, especially after the 1980s there has been an increase in
the activities of (nonprofit) commercial establishments providing care
and other services to the elderly.
And this tendency coupled with theories and discourse on "care" and "care ethics", mutually
strengthening each other, eventually resulted in all policies including
the long term care insurance (2000-) being run in the framework of
"mutual aid".
There is some field research on the activities of such organizations,
but there are no comprehensive attempts to identify the space of
discourse and practice encompassing the issues of IV.
The research in this area shall be conducted by Takashi Iguchi, who authored
Dementia: The Reality of Nursing Care by Family Members
(2007), by Haruo Sakiyama, one of the authors of Sociology of "Social Support" (2008) and also Akira Abe, the author of Ethics and/of Care (2010).
In research on policies from a point of view encompassing the issues of IV, we shall secure the support of Kosuke
Okabe, the author of Welfare Policies after Services and Supports for Persons with Disabilities Act (2010) and other research.
At roughly the same time the activities of independent living centers,
institutions run by people with disabilities and providing services for
them begin (1986-).
Although at one time accounts of the activities of such centers have
been produced by a nationwide organization, for quite a long time the
state of affairs has not been accurately grasped.
We shall contact the
"National Independent Living Center Council (JIL)"
(1991-), and start research on the results achieved by its member organizations and their management.
This research shall be conducted by
Satoko Maruyama, who has participated as
a researcher in the activities of such centers for a long time, with
cooperation of some graduate students who are already studying this
subject.
Care is also a battlefield of many competing parties.
One point that has been vehemently disputed since the end of the 1990s
was who should perform such actions in the category of "medical care" as suction of phlegm.
Presently, there is an ongoing dispute between those who are trying to
preserve the power in the hands of medical (or, rather, nursing)
authorities on the one hand, and those who have already been conducting
suction themselves (or using own organizations).
We shall look into the particulars of the dispute, examine the history
of the system, actual mechanisms and prospects for the future.
* After the 2012 academic year: We shall continue the above research
and publish the results.
We shall publish at least 4 monographs and papers a year.
However, since the data itself shall be very large, we shall make it
available to the public separately on a website.
We shall also choose the most significant papers for translation and
publish them in multilingual refereed journals (online and paper).
We shall also consider translation of monographs.
Since frequent symposiums, etc. may reduce the time available for
individual research, we shall hold them only when it is judged to be
truly meaningful.
Ą Preparations already made and methods of the announcement of the results:
@: There are already established activities of the Global COE
Program "Ars Vivendi" (ending in the 2011 academic year), incorporating
research on some of the issues that shall be addressed by this project,
and there is also the constant research base provided by Research Center for Ars Vivendi at Ritsumeikan
University.
Full-time clerical staff and post-doctoral fellows are hired on the
budget provided by the university; there is a library with capacity to
hold (and arrange so as to make them easily accessible) more than 30000
books and periodicals, a room that can be used for study sessions, and
an office.
A: Many of the researchers, who shall shoulder assignments within the
project, and also those who shall cooperate with us have already
collaborated with the facilities and projects of @.
Some teachers and researchers have conducted their research together
with the full-time lecturers employed at the Program or the Graduate
School, while some have obtained teaching and other posts at the Center
after conducting their research as fellows of the Japan Society for the
Promotion of Science.
There already is an established system of cooperation.
B: On the website of the Program mentioned above exceeding the annual
number of hits of 10 million,
http://www.arsvi.com, we shall
announce the information (including this application paper) and the
results of this project with links to about 200 web pages of data,
people, and organizations related to the research project.
Products of our research and other useful information will be
translated into English, Korean, and other languages, so that all the
people of these linguistic areas are provided with the data and the
results.
Moreover, we shall publish the results in referred journals published
in English as the main language.
A refereed journal published by the Center mentioned above,
Ars Vivendi
is available at general bookstores.
Ą Observance of protection of human rights, laws, ordinances, etc.
We shall strictly obey the "Japan Sociological Society Code of Ethical
Practice" (2005).
Moreover, in cases, where there is a guideline in the academic
institution the researcher belongs to, he or she shall also follow the
regulations stipulated there.
In Ritsumeikan University, we shall be subject to research ethics
inspection based on "Ritsumeikan University Research Ethics Guideline
for Research on People" (2009) (cf.).
http://www.ritsumei.jp/research/c10_01j.html
).