This lecture was presented as part of the International Program of the Global COE Program Ars Vivendi (Fall 2010).
There were many graduate students specializing in child welfare policies in attendance, and a discussion was held concerning the relationships between children and families and families and society.
We are grateful to Begcheon Choi for making this event possible.
A transcription [translated from the Japanese] of the exchange of questions and answers that followed the lecture is included below, and as I think it contains many points worth noting I encourage readers to take a look at it as well.
■ Issues concerning the family and the independent living of people with disabilities.
You are all studying child welfare, and, since I have not been conducting research focusing on children in particular, I came here without being sure of what I should speak to you about today. On a personal level I have a twenty year old child, and have had various personal experiences as a parent sending my child to nursery school, daycare, etc., and if someone wants to ask me about how these sorts of things are in Japan I would be happy to tell you about them to the extent of my knowledge. But since Prof. Choi has just said that while the focus of study here is child welfare I need not restrict my discussion to this topic, I would like to give a slightly shortened talk with this in mind.
When I was wondering about what to talk about today, I heard that last week Prof. Choi gave a lecture in Korea introducing and describing "Disability Studies". I thought I might continue along these lines by talking very broadly about disability and the disabled people's movement in Japan, and then about children, parents and families.
I am a sociologist, and while my focus has not been on people with disabilities in particular, as part of my work I have done research and published articles relating to people with disabilities and their social activism. It was about twenty-five years ago that I became involved in this topic. Before this sort of research began, in the early or mid seventies a "disabled people's independent living movement" had developed in Japan. I was university age, right about the same age you are now, but there were a few people involved in this movement around me so I began to be vaguely aware that this sort of thing was going on. After I became a graduate student I carried out surveys and research concerning individuals involved in these initiatives, and in 1990 co-authored my first book entitled Sei no giho in Japanese and Ars Vivendi in Latin. This year Hee Kyong Chong, who is one of my graduate students and is here interpreting for me today, has translated this book into Korean and it is now possible for you to read it in your own language.
In chapters three (Love as a social system - beyond the family) and four (Living outside of institutions - getting away from social welfare spaces) of this book I discuss and analyze the relationships between institutions and people with disabilities and between people with disabilities and their families. If you are interested in a detailed examination of these topics I encourage you to borrow a copy of this book and read it. I do not have enough time today so I will only address these subjects very briefly. The people I encountered through this work were mostly young people in their twenties and thirties who had been disabled from the time they were very young or from birth by conditions such as cerebral palsy and had grown up being cared for by their parents.
Today I will put aside all discussion of how life in institutions was, or is, for these people. I will only talk about their families. It is a major problem for these individuals when their family is no longer alive or is no longer physically, bodily able to care for them, and of course there are also cases in which they are abused or neglected by their families which is also a serious problem.
But they did not see only these sorts of situations in which their families had these sorts of problems or were not around as problematic. Even if, on the contrary, they had loving parents who took good care of them, this relationship between themselves and their families continued even after they had reached twenty or thirty years of age. Would they continue living this way for the rest of their lives? Should they continue living this way? They began to think about things in this way. Their parents were good parents, but because of the fact that they needed to be cared for by these parents they had to go on living with their families. Other people moved their bodies, went to school, found jobs, got married, and through these sorts of actions developed a certain sense of distance from their parents regardless of whether or not they continued to live at home, interacting with their parents while maintaining this sense of distance. But they themselves could not do this because of their disabilities. Wasn't there something wrong with this? They had to break away from their families autonomously and of their own accord. They had to get away from their families. They began to try to do so. This was the nature of their movement.
If we think about this without limiting ourselves to the context of the family, what it means is that however good the other person or people may be, or however well they might take care of my needs, I and the people who protect and care for me differ. There are differences [between us]. We cannot be made the same. I think this was the nature of their "self-awareness" or acknowledgement.
■ The relationship between social welfare studies and disability studies.
The topic I was given today is "disability studies," and the answer to the question "what is disability studies" is in fact directly connected to this [(the relationship between social welfare studies and disability studies)]; social welfare studies is fundamentally a field of study that examines those [people and institutions] who provide social welfare services, or in some cases the actual provision of social welfare itself. There is definitely a need for this. No one, myself included, can deny the meaningfulness of this sort of work, nor is there any need to do so. However, without thinking in terms of which is good and which is bad, there are, to begin with, differences between the people with disabilities themselves and the people who take care of them or are otherwise involved in their lives. And I think there may indeed be things that cannot be clearly apprehended within a field of study that takes only the perspective of those who provide these services. I have tried to investigate and think about these sorts of things. This sort of investigation or research need not only be performed by people with disabilities - I myself may not be disabled in the normal sense of the term; what I am saying is that if we only look at disabled people within the framework of the targets of social services and those who provide these services we cannot fully understand human beings, people, people with disabilities and their lives. This is the starting point from which what is referred to as "disability studies", not just in Japan but also in Britain, America, and, I suspect, Korea, emerged and continues to be developed. I think this can be said of this field of study.
This sort of social movement in Japan developed from the 1970s to the 1980s, and involved people with physical disabilities such as cerebral palsy. These are people whose speech may be impaired but are nevertheless able to speak and make themselves understood. [The movement] began with these people who are capable of expressing themselves and developed from there.
But if you think about it this is not a theme of discourse that should necessarily be limited to those with physical disabilities. In Japan, there were indeed people with mental or intellectual disabilities who spoke out against the idea that they needed their parents or their families or in opposition to what those running institutions said was best for them; in the case of Japanese people with intellectual disabilities, for example, this movement began in the 1990s. This approach has now expanded even further. This is this situation as I see it.
■ The "social model"
There are many things I could add if I were to go into the above topic in detail, but I will not do so here. I will discuss one more topic and then bring my talk here today to a close. I will now address this second topic.
I think what I have been discussing so far has mostly focused on the vantage point from which the phenomena in question are viewed and the starting point from which related issues are considered and examined, but the second topic involves what actually happens in practice, such as, in the case of physical disabilities, for example, [the fact that] someone must do things in place of people who are not able to move certain parts of their bodies on their own. This sort of thing is an undeniable fact. How have these facts been considered and understood? This is something that the disabled movement, the field of disability studies, and I myself have examined. I would like to discuss this briefly.
In the field of disability studies the "individual model" and the "social model" are often contrasted and debated. There is no uniform way of understanding or interpreting these terms. There are various different ways of thinking about them. In what follows I will give a very simple account of this issue, but a slightly more detailed discussion can be found in a text I wrote in Japanese, an English translation of which is available on our website.
Put very simply I think it can be stated as follows. The individual model holds that individuals are fundamentally responsible for their own lives, and people are told that they should bear this responsibility but if they cannot certain forms of support will be provided by society. This is how I see this model. To put it a different way, there is no need to hand over to others what you have earned, i.e., what you have received in exchange for working or have produced on your own. In this sense you have a right to receive the results/products of what you are capable of doing, and, at the same time, you must live within the means determined by these things you yourself have produced; this responsibility or duty is something you must bear on your own. [The individual model] is a way of thinking in which this is held to be right or correct.
Disability studies and the disabled movement question whether this way of thinking is correct. I myself have spent twenty or thirty years thinking about this. To state only the result of these deliberations, I have come to the conclusion that we should think of this as not being correct. So what way of thinking should we adopt instead? Each individual should be able to live as he or she wishes. The obligation to provide what is needed for them to do so belongs not to each individual but to society as a whole. Society as a whole must bear this burden. This idea forms the core of the social model as I understand it.
■ Disability studies and the family.
So where does the entity known as "the family" fit into this? When I was having coffee with Prof. Choi earlier we were discussing whether the issue of families does not come up as much in the discourse on disability studies in Britain and America.
I myself do not really know if this the case. Even in a country like Britain, when it comes to the care of elderly people, for example, a large amount, more than most people would think, is provided not by social services but by the families of the people in question, and I think that we should be careful not to view the situation in a way that is too superficial.
On the surface, however, there is a convention that once people become adults they should leave their families and live on their own. When this occurs, it may be that "the family" does not enter the discussion as another important element in addition to "the individual" and "society"; "the family" does not come to the surface as a third factor to be considered along with "the individual" and "society".
When you think about it, we should be able to say this about all of the so-called "developed countries," and this is how you would expect things to be. In reality, however, there are not two but three elements. The first is the idea that individuals should construct their own lives by themselves. The second is that if this fails their families should look after them. If this also proves impossible then society should step in and provide a certain amount of assistance - things are to proceed in this order. This sort of system or approach is not limited to Asian countries such as Japan and Korea.
If this is the case, if the two elements discussed earlier are not sufficient, then I think the issue at the heart of disability studies and of what is asserted by the disabled movement is as follows. Is the approach of proceeding in the order just described - first the self, then if that is not sufficient the family, and finally if that fails society - correct? This is what is questioned. Does this state of affairs make it easier for people to live their lives? When people [in the disabled movement] examined this question they became aware that this approach is not the right one, that it does not make their lives easier, and they made appeals to society on this basis. This is, I think, the position they have asserted.
So what do they assert should replace the current system? This can be stated very simply: society should support the lives of individuals to the greatest extent possible. This is the first principle that must be established. The approach should not be, therefore, that the individual comes first or that the family comes first or second. This is more just and would make people's lives better. This is what was, and still is, asserted, and this is the sort of movement that emerged. I myself saw things the same way and continue to share this view today.
■ This [approach] also considers the family to be important.
When I say these sorts of things people often respond by suggesting that I am trying to deny the meaningfulness and goodness of "the family," but this is completely mistaken.
In order for families to act as families, or for individuals who are close to each other to act as individuals who are close to each other, in accordance with the first topic I discussed today they should maintain a certain sense of distance and not bear excessive burdens of care for each other, whether they live together or live separately. Based on the first topic I discussed we can assert that this allows individuals to better live their own lives. This is my first point.
Based on the second topic I discussed, we can then say that rather than a situation in which family members bear all or a large proportion of the burdens of care, a state of affairs which can make their lives increasingly difficult and cause their relationships with each other to suffer, the interpersonal, family relationships of those in question would be improved if, for example, basic care or financial support were provided to help families in these situations. It can therefore be asserted that this approach, or in other words this state of affairs within society, in fact does more to protect "the family" and these interpersonal relationships.
So our research, and the program described in this pamphlet, is not just about understanding how people live their lives; it also concerns what is (for me at least) the fundamental perspective or starting point to be used when we think about how society should be structured going forward.
■ The meaning of making a record
I think it was around the same time last year that I visited Hyosuku An, who lives in Seoul, together with Hee Kyong. In part because of this visit she ended up becoming a graduate student at my University in Japan, beginning her studies in April of 2010, and her mother, who has a disease of the nervous system called ALS, came to live with her as well. As this disease progresses patients eventually come to require twenty-four hour a day care. They cannot go on living without someone looking after them at all times.
The families of such individuals have no choice but to provide this care, even if it means they can hardly sleep. If they do not the person in question will die, or choose to die before they would have otherwise. This is the situation that arises. It is not good. In Japan we have therefore tried to create a system that provides a different model of care. As she studies this, I think Ms. An is probably also thinking about what she herself should do and what Korea should do.
There are also other groups of people with similar conditions. One such group, for example, although they are slightly different in that they are children, are people born with Werdnig-Hoffmann disease, an illness which causes severe disabilities from birth. I was asked to speak at a meeting to commemorate the twentieth anniversary of an association formed by the parents of these children ("Ventilators Users Parents Association Japan (the Baku Baku Club)"). While they care for their children, indeed because they care for their children, they too are working to create a system in which they are not the only ones looking after them.
We have examined the topic of how these sorts of people - in the case of ALS people with ALS, in the case of children with "nanbyo" [a term used for certain incurable illnesses in Japan] people with nanbyo themselves - have appealed to society regarding these issues and sought the realization of their demands. In the case of Japan this has taken thirty or forty years. A movement calling for the guaranteed provision of this sort of public care began in the mid seventies. Forty years have passed since then, and little by little this movement has grown stronger. We have sought to make a record of the efforts of these individuals, to document the fact that this sort of movement existed and made these sorts of assertions, to note that this was something very important, and to communicate these facts to others. While engaging in this kind of research we ourselves also think about what sort of system should be put in place going forward. This concludes my talk today.
I am normally someone who is very considerate of interpreters, and I am usually careful to speak a little at a time and wait for the translation before proceeding, but today my graduate students were a bit late so I had to rush, and since Hee Kyong has translated our books for us and understands this material very well I'm afraid I have relied on his being able to translate long sections all at once. I'm sorry, Hee Kyong. That is all for today. Thank you.
■ Prof. Choi
Listening to the Professor's talk I get the sense that various scholars have indeed said various things.
I suspect that for this reason Prof. Tateiwa must have a strong desire to communicate the disability studies he is engaged in and the new perspective it offers. In Prof. Tateiwa, in the talk he gave, something that was mentioned often was the disabled movement. The reason for this is that disability studies is different from what has come before; it is not something difficult, however, but actually something quite simple. I think it can be described as follows: if there is a problem, for whom is it a problem? And in order to solve it from whose perspective is it to be addressed? Therefor our social welfare as it has been provided until now is insufficient, and is something which has been created by people in that world [(field)].
We also heard about work that gives meaning to the research, gathering of new materials and activities being conducted at the center. When creating social services, I think it is very important to listen to the feelings and sentiments of the public. But the perspective of the people with disabilities who have created this social movement has been excluded. I therefore think that the disabled movement and disability studies must not and cannot be ignored. I think this is what the professor was saying.
I think this can be seen in prof. Tateiwa's talk, but in my lecture last week I also talked to you about scholarship which is critical of itself and the importance of this kind of scholarship, and I while I think I talked about his last week what listening to Prof. Tateiwa brought home to me was the enormous importance of maintaining skepticism about whether what we consider fundamentally correct is indeed so. I think, therefore, that there is a connection between what Prof. Tateiwa talked about and the idea that it is important to maintain doubts and be critical of what we are doing and the things we are discussing.
I found his discussion of topics like whether or not we really belong to ourselves, and indeed everything he talked about, very interesting. I think these are issues that should be considered not just as they relate to things like care [for people with disabilities] but within a much larger social framework. It was an interesting lecture. I think that in his talk today Prof. Tateiwa has pointed out some very important problems and issues for us. Please ask him some questions.
I have not yet read Ars Vivendi, but within this project are there any plans to create a manual or set of guidelines for things like how people with disabilities can manage their daily lives?
I don't know if I can give you a good answer, but I think the question of how to make use of very specific methods/opportunities is extremely important. In this sense it is also very important, when it comes to technology, for example, to examine the concrete details. I would therefore like to do this in the future.
Since we are working in the domain of the humanities/sociology we cannot actually develop new technologies ourselves. But the people who develop these technologies do so without understanding very well what sorts of things the people who will use them actually want or conversely what sorts of things they do not need. This sometimes leads to pointless or wasteful efforts, so I would like to act as an intermediary between the creators of technology and its eventual users and communicate to the former what sorts of technology are desirable and what sorts are not needed or would not be welcomed. We see this as one of our jobs. This is one answer to your question.
Another answer, and this is something I stated at the start, goes beyond a narrow definition of "technology" to include something like "style" or "mode" - we call it "nori" in Japanese. I wonder how you would say it in Korean? We also say "ryugi". These people have their own ways of living, not just in terms of "technology" in a narrow sense; when people's physical conditions differ in various ways their mode or style of living is also different, and I think that these different ways of living are interesting in and of themselves, or at least that we cannot say which are better or which are worse. Rather than "technology" I think this might be closer to what is meant by the French word "art". In English the word "art" is also used, isn't it? The root word in both cases is "ars". Incorporating this kind of nuance I want to investigate and write about questions like how (in what spirit, with what kind of stance, with what sorts of feelings) do people live?
What do you think about what happens in cases when children with disabilities are abused - their forcible separation from their parents and subsequent care, how the state responds or should respond, what sorts of services are provided, etc.?
This question actually concerns a third topic I would have liked to have been able to address today in my lecture.
We say that the thoughts and desires of children themselves, of the person in question him or herself, is important, and I think this statement itself is indeed correct. I think the idea that we must first and foremost respect what the person (child) in question says is itself correct. If, however, I am asked whether this principle is always enough, whether it can be used to resolve all problems and is never itself problematic, the answer is no. This is true in the case of children, and related cases also arise concerning people with intellectual disabilities or mental illness. For example, there are people who have a desire to kill themselves or a tendency to harm themselves or others as a result of mental illness. In these situations it is not as though people should be permitted to do these things just because at the time they say they want to. When you think about it these sorts of things occur quite often in this world, in this society.
This being the case, then, depending on the situation what the person in question says should not necessarily be accepted as is; depending on the situation someone else may have to go against what they are saying and make decisions for them. This is also referred to as "surrogate determination" ("dairikette"), and there are certainly cases where it cannot be avoided.
Who should make this kind of determination, and on what sort of basis must it be made? This question, including its philosophical/ethical aspects, is, I think, an extremely theoretical and very important subject of inquiry.
One thing at least which can be said here, I think, is that in these cases parents do not have any special rights or authority regarding their children just because they are their parents.
To give the easiest to understand example, I would say that it is wrong to say that it is OK for parents to abuse their own children because they are their children, and I assume you would agree. Regarding the current public policy situation in Japan, from places where intervention has been difficult, for example, there are facilities called "child guidance centers", there has been gradual movement towards greater acceptance of intervention by these sorts of institutions and the fact that such intervention cannot be avoided.
In this sense, I take the position that there are cases in which state intervention concerning parents and the family can be justified. However, that is where the questions - the interesting or difficult questions - arise. If we stop here we need not face any difficulties.
For example, you may have seen some of Charlie Chaplin's movies. Putting aside the question of whether Buster Keaton's films were more interesting, Chaplin's movies are very old but can still be seen today, and in the past, not only in Chaplin's movies, there were lots of films whose drama centered on, for example, children being whisked away to institutions, and, for example, a child being taken away from Chaplin's tramp character and put in an institution because "you can't leave a child with that sort of man". There are lots of these sorts of stories, aren't there? Regarding this, we think that in some sense Chaplin might be right; if not necessarily right, at least there is a part of us that wonders about taking children in this way.
Chaplin is living with an orphan, and when we see some sort of American welfare officer put the child in a car and dump them at an institution there is some part of us that feels that somehow there is something wrong with this.
■ Sachie Yoshida
Let me explain that a bit. Those children lived with Chaplin and were close to him. But Chaplin was a tramp. So the social welfare officer came and took them away because of the idea that a tramp can't look after children. But when we watch these movies we feel as though they would be better off with Chaplin - that their life with him was happy - and we wonder why they are being taken away.
If this is case it means the following. Just when we are thinking there is no point at which government intervention stops, at exactly the same time, we also avoid this intervention in some cases, or feel that it is dangerous or wrong. I think this can be said to be the case. I also think that in fact when we think about child welfare and problems concerning children this is the most basic, fundamental question. Coming up with an answer is indeed difficult. It is no good to simply say it is difficult and give up, and the question of how we should proceed is a subject for study.
If we are to do this, then to begin with, from the parents side, for example, their actions may not be born from a simple, obvious desire to behave violently, but instead from a desire to raise their child as a good child, for their child to become a good child. This in turn is something we have to examine. Is this sort of thing good? We can also say that it is necessary to consider whether parents should be able to expect certain things of their children, or expect them to be a certain way and coerce them into growing up to be the sort of person they want them to be.
On the other hand, from the perspective of the state, there is a model of a human being which is correct or useful to the state and society, and from this perspective it may be suggested that children raised by that sort of person would be no good and thus must be taken to a different environment - these sorts of interests are at work here. At the same time there is thus a need to think about how far it is acceptable for the state to go in shaping and creating human beings in line with its own interests.
I think this is one of the fundamental issues that must be addressed in the social sciences. I would like to add one more thing.
The final thing I would like to say here is that if, for example, there are cases in which the state determines for itself what a good or proper person is and tries to push children towards that ideal, parents or families will of course do this as well, and I think priority should be given to the latter. Let me also give a brief explanation of the reasoning behind this assertion.
This is perhaps a somewhat optimistic claim, but I think that when parents, not just real parents but also people like the character played by Chaplin, come to know their children, who are distinct human beings, through intimate proximity, while they may think that people ought to be a certain way or desire their children to be a certain way, at the same time realize that in practice this is impossible or very difficult. They understand that human beings just aren't like that. I think parents realize there is only so much they can do and go on living and interacting with their children as best they can. And don't we think, mustn't we think, that it is a good thing for children to grow up, to be raised in this way, insofar as it involves people accepting other people and adapting to each other? In this sense, while I acknowledge that there are instances in which state intervention is necessary, I think that fundamentally we should first support those people who are closest to the child in question and have developed a relationship with him or her.
■ Graduate student
He has a question about autism. Autism. What he is involved in now, what he is doing is aimed at adults, but he is thinking about how people can live well in society. He is now involved with "Respite". It is called "Respite", but what these people with autism are thinking, they are thinking about creating a community and living there. Recently in Korea the image of institutions has not been very good, so institutions are being built like towns and given names like "village". You have the same kind of thing in Japan, don't you? In Kobe there is a place called "happy village". In what ways are places like "happy village" different from institutions? And how are these sorts of communities viewed in Japan?
In terms of the first topic I discussed today, even in the case of people with physical disabilities, while there are not only the two patterns of institutions and people who live on their own or create their own families, but also, for example, the idea of "group homes", fundamentally the two models of living in an institution and living on one's own have been quite predominant. In Japan too, in the case of people with physical disabilities.
In Japan, in the 1980s there were disputes among people with physical disabilities, some of whom thought group homes were a good idea and some of whom thought they were a half-measure and essentially no different from institutions.
Nowadays, from the 1990s onwards, rather than an advocacy movement it has on the contrary become public policy; those on the policy side have come to talk about de-institutionalization as a good thing, particularly the de-institutionalizing of people with intellectual disabilities, and while I do not know in what ways and to what extent these small institutions or "group homes" are similar to the Korean model you mentioned, I can at least tell you that small scale (four to six resident) group homes have begun to be promoted by those on the policy side as an alternative model. In the case of people with mental disorders, there are intermediary institutions to help them move back into society. These secondary facilities in between institutions and regular society began to be promoted around the same time. Whether or not this is or was a good alternative model has also been debated in Japan. One side criticizes the current model of de-institutionalization, stating in essentially the same terms as those employed by people with physical disabilities that this approach is a half-measure, that small institutions are still institutions and fundamentally each individual should live in a place of their own choosing.
I think that to a large extent what these people say is correct, but it's as I said before. In other words, not always but in some cases, when situations arise in which the decision making of the person in question must be stopped and decisions made for them, the question of what sort of living arrangement is best remains. The criticism of [group homes as] half-measures is correct, but if it is claimed that if all individuals are separated and live on their own everything will go well, there are instances in which this is not the case. Here there are indeed difficulties of a different sort than those that arise in the case of people with only physical disabilities.
Let me add one more thing in conclusion. I have only one nephew. He is in the first grade of elementary school, and he is that type, someone who might be described as "high functioning autistic", that type of boy, and when I first met him I thought "oh, that's what it's like," but while there are some people with whom he doesn't actively interact there are others with whom this is not the case. There are times when he is very outgoing. I think there is this kind of tendency, itself not necessarily a good or bad thing, among autistic types - this is just how they are; just as there are people who like forming groups with others there are also people who don't like to be in groups or simply prefer to do things on their own. I cannot say this is either a good or a bad thing, it's just, how should I put this, part of their character or their nature. When this sort of thing is taken into consideration, I think we need to once again examine what sort of living arrangements or support for living arrangements is desirable.
Original Japanese transcription: Yui Hasegawa