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ReBuilding the World from COVID-19

TATEIWA Shinya@2020/06/2307/18 [Japanese]
East Asia Disability Studies Forum 2020, Webinar on COVID-19 and Persons with Disabilities in East Asia
COVID-19

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1-1. Project overview

@Part I expands on work already underway, collecting and organizing policies, responses from scientific associations, news reports, and so on. Through discussions with national associations of media organizations, we will make as much of this information publicly available as possible. Particularly in regard to disasters, we will obtain basic guidelines on the public release of information. In Part II we will investigate what has been said, done and not done in regard to gpeople,h gthingsh such as buildings, machines, and medicines, , and the demand, production and supply of gtechnologyh related to them in the context of these circumstances. Based on this we will present a more rational approach to the distribution of people, things, and technology. In Part III we examine and verify the discourse and realities surrounding the establishment of prioritized ranking in regard to human life and the state of society, including issues such as discrimination in who is targeted by policy responses. We also offer new approaches different from what is being discussed now. In Part IV we look at the clear bias in how this global event is being dealt with in different regions. We will try to grasp the situation in regions where problems are most severe, and consider and propose approaches to the provision/transfer of technology, knowledge, resources and personnel to these places. At the same time we will increase our collection of information and research on other diseases such as tuberculosis, leprosy, polio, and HIV/AIDS, determine what has changed and what has not, and obtain more than the lesson that we must not be taken in by rumor and baseless speculation. Through Parts I to IV we will address the current circumstances beset by a sense of crisis surrounding COVID-19 and plot out a society/world that breaks free of them.


1-2. Overall design of the project

(1) Aims of the project
@This project aims to investigate how people, things, and the technology/knowledge that connects them should be distributed/transferred in an emergency. This also means examining what should be considered and put in place under normal circumstances ? albeit, of course, normal circumstances in which emergencies are anticipated. While working to contribute as much as possible to improving the circumstances that are occurring now and will presumably spread throughout the world, it also aims to examine how things should be set up in the long term, including responses to the various crises that will presumably arise in the future.

@T Collect/verify and make public, evaluate and propose
@II Investigate and propose plans regarding the distribution of things, people, and technology
@V Assess the position of ethics and present accurate theory
@W Look back over time and expand space to get a clear view of society

(2) The target/theme of the research, its meaning and background

T Collect/verify and make public, evaluate and propose

Target/theme
Understanding of the circumstances, planning and implementation of policy responses, and the state of notification and reporting regarding these elements. This project organizes and examines these factors as a whole. To begin with, there are already roughly 75,000 words of content and links to 1,315 files in the gInfectious Diseaseh section of our research centerfs website. We will reexamine, augment, and organize these documents.
In some areas, as a result of actions of news organizations or government agencies, identifying information of individual infected people has been made known on a wide scale. We will study what sorts of events and circumstances led up to this kind of thing occurring and establish minimum rules.
Systems for making information public. Through discussions with news organizations and their associations, we will negotiate for an approach that would allow information whose publication would be beneficial to be made publicly available while respecting copyright.

Meaning and background
In order to consider the positioning and positive and negative aspects of policy planning, planning systems, and information collection and communication, to begin with it is important to establish who said or directed what when, and where and how this communication or direction was received. One example is changes in information issued by government offices ? in some cases information on a government website is not arranged chronologically, and it is impossible to know what was posted when. Even when information has been made publicly available there is still a need for reorganization.
Regarding the manner of reporting, a comprehensive evaluation takes time, but simple errors in reporting are quite numerous. It is important to quickly establish what is being said and on what basis (or indeed without basis). It is necessary to reflect on events in a short time while they are fresh in peoplefs memories. Better approaches may be found by looking closely at methods of communicating scientific knowledge/information.
Since the T?hoku earthquake and tsunami (2011), we have come to see the value of collecting each dayfs information and posting it on our website, and we are positioned to successfully do so. We have had to limit ourselves in what we make publicly available, however, out of concern for (legal) copyright. When it comes to important information in emergency circumstances, however, at least some degree of special treatment should be established. The people involved in day-to-day reporting want this, and news organizations also accept its necessity. It is possible an agreement can be reached through negotiation. Candidates for our counterpart in this negotiation include organizations such as the Japan Newspaper Publishers and Editors Association.
Regarding Part IV, there is the possibility of making public historical reports and other information. For example, regarding the pre-war period or local areas/regions, there are articles that are not available on the Internet at all, either for free or behind a paywall. Regarding the topic of infectious disease, it would be useful to create a system that would make the past more accessible.
As an institute (Institute of Ars Vivendi, Ritsumeikan University) we have been working toward the creation of an archive (uH蓹T\\ǵ~ЉA[JCu̍\zv). This includes not only the assembling of publications and reports, but also the conducting of interviews, transcribing the recordings, and, with the consent of the participants, organizing them and making them public. Drawing on this experience, we will collect and organize records as a part of an archive of this period.


II Investigate and propose plans regarding the distribution of things, people, and technology

Target/theme
People, things and technology corresponding to the situation. While keeping changes in the economy as a whole related to COVID-19 in view, to begin with we will focus on the movement (shortages/production/distribution/etc.) of gthingsh (medicine, devices, facilities) and gpeopleh (doctors, nurses, and other healthcare personnel) related to the prevention and treatment of the disease, and the gtechnologyh that is connected to and mediates them. We will examine relevant policy interventions and verify their effects, and investigate possible paths forward and paths that should have been possible (but were not in fact taken).
In undertaking the above, the spread of COVID-19 now and in the future, particularly in developing countries, falls within our field of view. Our research includes the consideration of the international transfer of technology and the distribution and movement of people and things. It has been necessary to restrict the movement of people, and this necessity will presumably not go away in the future. But there are some things the movement of which this state of affairs itself necessitates. In other words, in order to prevent the movement (mainly across borders) that people find undesirable, there are things and technologies that must be moved/provided/donated.
Technology related to distance and close contact. Because of these circumstances, the scope and distance of contact between people has changed. What has become clear in this instance is that, mainly through communication technology, many things can be done at a distance. This should be advantageous for people who have difficulty with physical movement. Under these emergency circumstances, however, it has also become clear that we must create technology anyone can use and social systems regarding technology.

Meaning and background
Before discussing the ethics of gtriageh (see Part III), or at least concurrently, we should confirm the extent to which ethics must be given consideration. What exactly leads to a tough situation, or a tough choice? We have forgotten the large numbers of deaths caused by HIV/AIDS we experienced in the first ten years of this century, but this issue was deeply tied to the ownership/movement of technology (see Part IV). At the time the main problems were patents on medicines and the prices set by their owners. Today there is a focus on how the development and in particular the provision of medications and vaccines is to be carried out, but before that or at the same time there are various other things that are required right now. Most of these things have already been developed and can be manufactured, but that has not directly led to a situation in which they are available to people everywhere in the quantities needed. The realization of such a situation, however, should be possible. So what has caused the difficulties? We will examine this problem and indicate steps toward a solution.
Being able to physically move your body and being able to do something while staying in place ? these are not either/or options. Contact between one personfs body and another personfs body and cases in which what is needed can be accomplished without direct intervention or interactions can take place at a distance ? these are not either/or options either. Both close contact and staying at a distance are required at the same time, and both should be sought. No one would disagree thus far. In addition, one question is how this is to be accomplished in each case. Another question is how various things are to be managed and combined within these two overall categories. And when this is done, what sort of opinions from which people should be listened to? This is also an experiment involving distance and time.
In this case the speed of events has called for immediate responses. This has been a good opportunity for people dealing with physical limitations. That being said, while it should be easier to have an interpreter if they do not need to be physically present, for example, in practice this is not currently the case. Various systems and devices are required, and they are not ready. In principle they should not be very difficult. If we can connect technology and users, more effective and efficient technology and social use of technology will presumably become possible.
On the other hand, however, it is necessary to be cautious concerning the speed of change when it comes to the move toward technology that allows people to live without contact or direct human intervention. Even before the current situation there had been a trend toward reducing labor. While mechanization should be beneficial to those who require nursing care, for example, it may also be uncomfortable or disadvantageous. For those around them who can reduce their labor, on the other hand, it is only beneficial with no drawbacks. If so, the pros and cons for the person in question may not be given sufficient attention. We will investigate and present an opinion regarding the state of the introduction of technology that renders close contact with peoplefs bodies unnecessary.


III Assess the position of ethics and present accurate theory

Target/theme
Establishing the position from which ethics are discussed. Because of the circumstances, there are cases where it is deemed necessary to determine an order of priority regarding medical care/lifesaving efforts, and cases of this actually occurring have been reported. In Japan, too, when such writings are published, the media sees it as their duty to report on them. In reality concerns about this issue have emerged all over the world, but this fact is not well known. Our website is therefore collecting materials from many countries. This July, with the gInternational Disability Studies Seminarh held every year in various countries being for the moment impossible, we are hosting an online seminar for people in the East Asia region. In this way we will continue to collect and transmit information. We will also review the extent of the arguments concerning gtriageh and the glifeboat problemh that have already been made in the past.
Questioning and answering on this basis. There are people who consider the fact that such arguments exist and are included in widely circulated media itself a serious issue. Even so, however, when the need arises such approaches are seen as inevitable or unavoidable. This discourse on ethics is presented in connection with gsuch circumstances.h It is therefore closely related to what is studied in Part II of this project. What sorts of circumstances, or understanding of circumstances, are related to decisions and arguments about decisions? We will produce a view that will indicate gwhoh is speaking gwhen,h including the question of their position. By the end of this project we will put forward a fundamental and comprehensive opinion on these difficult questions.

Meaning and background
There are lies and misunderstandings. In some cases these include ill intent, while in others someone simply makes a mistake. We will confirm each case as what it is (see Part I). There is a need to seriously and thoroughly consider what is presented as inevitable in a time of emergency and/or good and just. Under what are considered emergency circumstances, people come to believe it is acceptable to shift what is normally thought of as purely theoretical toward actual implementation. If the argument must be accepted as a theory even though it is hypothetical, perhaps it should be used. But do the arguments being presented now meet this standard? We donft think so, but sometimes people or media who want to maintain that something is true accept and report it without understanding it. To begin with, however, many of these assertions are difficult to accept even in terms of academic inquiry. At very least, if there is going to be a debate there must be enough debate to properly call it a debate.
These are not simply academic questions. What is discussed may actually be implemented, and since these are questions of gbioethicsh they obviously involve the life and death of human beings. Even if they are not ultimately put into practice, such assertions may make it impossible for those who learn it is people like them who would be the ones who are to be sent out of this world to continue life as normal. It is therefore important to know who said these things and in what kind of situation, and how these assertions were then disseminated. It is necessary to confirm what was said, what was said and done, and what was done without being said. In cases where such opinions and their realization have already spread we will address them directly, and if a response is required we will conduct a debate that can properly be called a debate and present the results.


W Look back over time and expand space to get a clear view of society

Target/theme
The world. COVID-19 is spreading throughout the world. This is not so much a certain prediction but a current reality. While making the inconsistent interest, ignorance, and obliviousness towards several previous epidemics itself a target of study, regarding COVID-19 we will expand the targeted regions. We have already begun collecting materials concerning Africa, and we will focus on the circumstances in Africa, South and South-East Asia, and Central and South America, investigating aspects such as healthcare systems and economies. Focusing on activists and scholars who have long been involved in policy, we will study the relationship between developments in international infectious disease prevention measures over the past twenty years and the current situation and seek to ascertain the fundamental approach of the first half of the 21st century.
History. Regarding the history of the connection between infectious disease and society, limiting ourselves to the twentieth century onward we will organize existing research, fill in gaps, establish differences between each infectious disease or epidemic, and position COVID-19 within this account. We will study the intricacies of disregard, ignorance, and obliviousness along with confusion, exaggerated reporting, rumors, and panic.
Similarities with the past have already been noted, but it is necessary to increase the precision of their description. To begin with our focus will be on issues related to resources and technology (see Part II). In the polio outbreak that occurred in Japan in the 1960s, there was a demand for the importation of a vaccine manufactured in the Soviet Union but complications arose in relation to the political situation at the time.
There are several other points we will focus on. One of these is the question of in what sorts of situations there is a movement toward admittance to hospitals or institutions, and when this trend is reversed. In the case of tuberculosis, large-scale admittance was carried out immediately after the war ended, but as soon as the 1950s a policy of discharging patients was being advanced, and a movement in opposition to this among those who had been admitted developed. Another point to be examined concerns prevention, isolation for the sake of prevention, and the setting of limits in this regard. In the case of leprosy, excessive isolation was pointed out and criticized for being unnecessary given the low transmissibility of the disease. Despite the validity of this criticism, this isolation was not rejected for a long time, and even when it had been rejected the policy/reality of isolation continued. Several studies have been conducted regarding what sort of circumstances were present during this process. There has not been any research, however, giving an overview of how the development of science and policy and the establishment of the limits of what should or should not be done shifted both domestically and internationally. The development itself is known only by a very small number of experts. Moreover, this knowledge and assessment belongs to medical experts who implemented the policies, and their stance was clear from the start. There is thus a need for research conducted by those not so closely involved. We will carry out this kind of research.

Meaning and background
This pandemic calls to mind comparatively recent outbreaks such as bird flu and SARS. On the other hand, people considered to be historians appearing on television also talk about the deadliest diseases of the past such as bubonic plague and cholera. But looking back and ruminating on these epidemics is not enough. In the second half of the twentieth century alone there was leprosy, tuberculosis, polio, and HIV/AIDS. But regarding leprosy, which, exceptionally, has had regular study, and sanitorium patients/what happened outside of sanitoriums there has been only a small amount of documenting and research. People who have experiences of what happened before are reminded of the past, recall similarities with the situation today, and deplore what is happening, but merely sympathizing wonft do anything. We will establish differences and similarities between societyfs relationship to various infectious disease outbreaks of the past and this relationship today, including the belated collection of these memories. It is embarrassing to admit that we are only trying to study this now because of what is happening, but is still better to do this research than to continue to neglect it.
Regarding HIV/AIDS in Africa, from 2003 to 2007 we gathered information, created four volumes of reports and other documents, and made policy recommendations. I think this was to some extent meaningful. Particularly in Japanese society, however, the situation became somewhat known at one time and was then forgotten, with what has happened from that time to the present remaining unknown. There was a time when three million people were dying every year. The large number of deaths was connected to the problem of drug patents and prices. A compromise was reached regarding the patent issue, and the transfer of technology became easier; medicine from India and Brazil was brought to Africa, and the situation was somewhat improved. Having been involved in such efforts, private organizations and activists who have been in constant negotiations with the UN, the WHO and the foreign ministry will take part in this project.


(3) Fundamental questions to be considered in this project

@This project aims to illustrate how people, things, and the science and technology that connects them are and ought to be.
@For example, in the world of sociology/social science, gsocial defenseh is a word that has been given a negative meaning from the start. But this feeling, in the current circumstances or even before, is simply being ignored. If we do not raise the level of precision of analysis and discourse nothing will be accomplished. The assertion that we must strike a gbalanceh between individual rights and the public good is surely not incorrect. Saying only this, however, is the same as saying nothing at all. What happens presumably does not occur only as a conflict between gmeh and people other than me, that is, gsociety.h Based on the awareness of the limited nature of resources, some things are prioritized over other things. As a result, or indeed as an intended outcome, some people are put at the back of the line. As a consequence, these people die and their deaths are not a cause of concern.
@The state of affairs regarding the creation and use of technology, and the state of social interest in it and ignorance of it, no doubt also leads to an increase in disparity between people. The fact that even in the twenty-first century, many more people than in the current COVID-19 pandemic, up to three million per year, have been dying of HIV/AIDS has been forgotten. Or perhaps more accurately, it was hardly known in the first place. The same thing is already happening this time, and if nothing is done it will expand. When there is semi-intentional obliviousness, we try to stand on the side pushing back against it. We believe research ought to be this kind of undertaking.
@We also want to be calm and analytic in the midst of talk of a crisis and extreme difficulties. What kind of components is (the discussion of) a crisis made of? When they are picked apart and examined, how difficult is the response to each of them? A crisis requires an emergency response, and as a result it is said that if there is some division, leaving behind, and obliviousness it canft be helped. We will pause to calmly investigate and consider the question of whether this kind of narrative has to be accepted. We think academic inquiry ought to be used in this way.


1-3. Looking ahead to the future beyond this project

@In a society in crisis, the amount or degree of things that exist in people and in society, for example, the degree of knowledge/insight, or even what might be described as its character or quality, are exposed. Putting up with hardship is inevitable, and encouraging each other when we endure suffering is a good thing, but in what sorts of places is this enduring of suffering being concentrated, and what does this cause in society and the people living in those places?
@It is not clear how seriously this crisis (or sense of crisis) that is wide in scope and vague but seemingly concrete is in fact being taken, and in response to it we believe that being cool-headed and maintaining a certain distance is both necessary and effective.
@In particular, we should consider what is it that is necessitating the ultimate choosing/selecting of human lives. Various things will be needed until an geffective treatmenth appears, and indeed even afterwards. This is indeed the case. But a narrative develops in which there is a crisis because these things are lacking, and as a result... But what are these things in concrete terms?
@Are gthingsh that cannot be created with technology being required? Is there a shortage because raw materials were rare to begin with and will immediately run out? Are disinfecting alcohol, masks, ventilators, and hospital units equipped with ventilators these sorts of things?
@What is also being required is gpeople,h and people with the knowledge and technical skills that enable them to deal with people who are ill. Making sure there are enough of these people may be more difficult than in the case of gthings.h To begin with, however, it should at least not be impossible to impart the necessary knowledge and skills to people, and to recruit people who already have them.
@Precisely because there is a crisis, we consider and seek out the potential for a society with enough leeway to avoid shortages. We not only seek it out but seek to realize it. This leeway to avoid shortages is extra capacity that can be demonstrated in a crisis. By using human capacity efficiently through the skillful deployment of technology, we can conceive and realize a society that can get by without excluding, or thinking about excluding, people who are not productive.
@What is important here is that this state of affairs is not some distant dream. Right now we must indeed rush ahead in a bit of a panic, but in order to somewhat reduce this panic it is necessary to calmly and dispassionately deal with the situation, and under the present circumstances efficiencies must be attempted in practice and not as thought experiments. This project is part of an attempt to have society operate more efficiently going forward.


1-4. Anticipated challenges and obstacles and measures to tackle them

@If we try to do everything that needs to be done, it will be an enormous task. Under the existing constraints, such as the budget and the number of personnel the budget allows, it is impossible to do everything. We must also assemble and present results after two or three years at most. We therefore have no choice but to assign an order of priority and are actively working to do so. Once every two months we will examine the overall state of progress of each aspect of the project and consider (and if necessary change) the priority and weighting of each undertaking ? we have previously spoken skeptically about choosing/selecting, but here it is acceptable. As a result there may be cases in which we halt one part of the project to focus money and personnel on another part with a higher level of priority.


1-5. Creativity, ambition, other notable elements

@Fundamentally this project does not need to be creative. What is obvious needs to be made obvious, and this is all we are planning to do. Unfortunately, the institutions and people who are actually engaged in this are quite limited.
@The gCenter for the Study of Ars Vivendih was selected by the Ministry of Education as a Global COE in 2007. Five years later this government program was abolished as a part of a greorganization of programs.h It is not clear what happened to most of these gcentersh after the program ended, but it seems that many became almost completely inactive. We have continued and expanded our activities at the gResearch Center for Ars Vivendih that was established simultaneously with our selection as a COE (in 2019 this became the gInstitute of Ars Vivendi,h a regular research institute within Ritsumeikan University). In doing so we have fostered the development of many researchers and created a significant body of work.
@When the 2011 T?hoku earthquake and tsunami occurred, we examined how marginalized people were further marginalized under what was considered a state of emergency, and tried to present several, mostly quite minor, policy measures ? concerning, for example, the use and distribution of ventilators. We gathered and presented information concerning an event (a 2017 court case) related to the sterilization surgeries conducted under (and after) the Eugenic Protection Act, and in the process learned that reporters were concerned that new materials that had been carefully collected by various news organizations would be lost. Through collecting information and reporting after the mass killing of people with disabilities at an institution in Sagamihara City (2016) we confirmed the importance and limitations of trying to demonstrate good in opposition to evil (ggood practiceh). We saw that appealing to peoplefs understanding only reaches those who reflect on their own understanding; anxiety about the future of society cause pessimism, but this pessimism does not bring resolve ? on the contrary, it brings resignation in response to the excessive selection of lives. This cannot simply be conflated with what is happening surrounding COVID-19. But there is indeed a connection.
@We can grasp what is happening in this era. We have had no choice but to examine these sad, painful events, but on this basis we have come to sense the possibility of calmly conceiving of a society and seeing it realized, and the path toward doing so has come into view. Beginning from what is happening or what seems likely to happen surrounding COVID-19, we will move beyond this situation to lay out a road the world can take going forward and work to make it a reality.


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