* The Term "disability" used below is not "disability" in disabilitiy studies in UK, but it does not mean "impairment" itself.
*cf.Tateiwa, Shin'ya 2010/09/07 "0n "the Social Model"" ［Japanese］
I try to think if absence of disability is good or not. I will state that existence of disability is not always bad for the people who have disabilities, on the other hand, it is not good for the people around them, so if we simply say "absence of disability is good", this fact will be hidden 1).
1 What is this question ?
I wonder if this is so important theme. Disabilities have already existed, so it may be more important to think how to live with them. It would be simple thing to live simply, but the ways to realize it are not so simple, and we should think carefully (Tateiwa 1990 ; 1995a ; 1995b ; 2000b).
And I think it is unjust that we must affirm and continue affirmation. We should only say to the people who discriminate disabled people, "You are unjust". We don't have to do further 2).
But when there is hostility toward disabled people, and they have to live in oppression and neglect, affirmation is necessary and powerful as resistance to them. We cannot continue to live under negation, so we must have tools to clear them out 3).
And as for disability, this theme is not only about "identity", but also related or is told related to medical treatment, rehabilitation, prevention and prenatal diagnosis et al. In this sense it is realistic theme.
There are some concrete contexts that affirmation and negation of disability and / or disabled people have discussed in Japan. One was the maneuvers to amendment of Eugenics Protection Law (1948-) and social movement against it in early 1970's and early 1980's. Some people including disabled people and some feminists criticized that the law deny the existence of disabled people. And they become have doubts about "early detection" and "early treatment".
Other one was between environmentalists and disabled people. Since 1970' the biggest and most important social movement is the movement against environmental pollution. And some people have participated in both environmental movement and disability movement. But is the environmental movement consistent with the disability movement ? In late 1980's (Chernobyl nuclear power plant accident was 1986), movement against nuclear power plants became active. And in the movement people told fear of disabled baby's birth by radioactivity. And some people feared the fear.
2 Is being able better?
To the question of "nuclear power plants and disabled people", Aiko Tsutsumi's answer was that we are against nuclear power plants not because disabled people will be born but because they give us death and pain (Tsutsumi 1988 ; 1989). The assertion was that we don't want death and pain, but being disabled people itself is not bad. I think it is just about right.
But someone may wonders if it is enough reason. Does it mean that death by traffic accident is not good, but injury is not bad? If there is technology which doesn't give but death or pain, but give only disability, isn't it bad technology? In reality there are mines not to kill but to injury people. Of course, if we are injured, we usually have pain. But if disability with no pain is given, is it not bad?
Compare with above, the argument of Peter Singer, one of famous bioethicists, looks clearer.
"If disabled people who must use wheelchairs to get around were suddenly offered a miracle drug that would, with no side effects, give them full use of their legs, how many of them would refuse to take it on the grounds that life with a disability is in no way inferior to life without a disability? In seeking medical assistance to overcome and eliminate disability, when it is available, disabled people themselves show that the preference for a life without disability is no mere prejudice."(Singer 1993, p.54)
"To be able to walk, to see, to hear, to be relatively free from pain and discomfort, communicate effectively--all these are, under virtually any social condition, genuine benefits. To say this is not to deny that people lacking these abilities may triumph over their disabilities and have lives of astonishing richness and diversity. Nevertheless, we show no prejudice against disabled people if we prefer, whether for ourselves or for our children, not to be faced with hurdles so great that to surmount them is in itself a triumph."(Singer 1993, p.54)
Singer says, if disability can be eliminated, we will eliminate, so no disability is good, having disability is itself bad. No disability, elimination of disability are "genuine benefits". We call it (A).
And there is another factor(B)：disabled people have right to live. And (A) and (B) are combined. (Singer doesn't say directly (B) above, but he told that in other books. And other many people add (B) when they say (A). ) That is to say, disability and disabled people are taken to be separated. So (A) does not mean negation of disabled people. If these two are not combined, (A) may become only discourse of discrimination and exclusion of disabled people. If disability cannot be eliminated, we should treat disabled people politely, but if it can be eliminated, we have better eliminate, if prevention is possible, we have better prevent. It looks like reasonable. And we don't need quote from Singer. Many people may think so. If there is no disability, it is good, it is better. I myself half agree to this. People hear that "disability is individuality" and may nod, but don't believe seriously.
What can we say? Some people have complained about it. But to think normally, appearances are against them. after all it seems that we cannot help saying that absence of disability is good, elimination of disabilityi is good, and existence of disability is bad.
But we should stop here and think. I feel there are some reason in the people who recklessly resist that conclusion. I think there are ways to accept their complain. I know I am under disadvantageous position but I want to think as possible. Of course there are various disabilities. We often talk about disabilities without knowledge, so we should start by trying to know them. But here I can only make general discussion.
And on one hand this theme is related to ability/dis-ability, on the other hand it is related to difference of figure and appearance. In the social movement against nuclear power plants, fear of "deformity" has often been talked. But I will concentrate on ability/dis-ability in this article.
3 It is necessary to be able but I don't need to be able necessarily
If some purpose itself is good, it is good that there is means to realize the purpose, and power to realize purpose is ability, so tautologically having ability is good. We must do something to live, so ability to do it is good as means to live, if it is good to live, having disability is not good.
But firstly, the purpose itself is problematic. Ability is power to realize something, so power to do something bad is ability too. If people can do nothing, they cannot do evil deed. If we deny human behaviors in this world or this world and basically, disability is better. For example people with intellectual disabilities have been seen as innocent. But many of us have attachment to this world, so they (we) cannot say that it is better for us to do nothing useful in this world.
Secondly, what are useful depends on age and situation. It has been sometimes pointed out too. For example it is said that there were not many works which need intellectual abilities as now, intellectual disabilities is disadvantageous because we live in this age. Such understanding may be right. But there are many things necessary to live in every age and abilities to produce them are needed. And, even if what are needed changes with age and society, they are needed in each age and society, we cannot say that abilities needed in an particular age and society are essentially unnecessary.
But it is not the end. There is the third point, and it is the most important . For example in the quotation from Singer, that "I" can do is made benefit. This is quite different from what I have confirmed above. It is very simple point, but mistakes begin from this point.
Eating and living is good, so it is good and necessary to move body to make food. But, to make food to eat and to live, my body move or your body move, either will do. Some people must make, but it is not necessary that person who eat is same person who make.
For example people with intellectual disabilities have limit of understand complex things. But is it bad ? Are there reasonable reasons ? World is complex, so we must correspondent to its complexity. This is reasonable. But we only need total sum of abilities just to correspondent to the complexity of world. We don't need all the people can do. I myself need not to be able. Even if I cannot do complex calculation by myself, somebody else or machine can do it. In this case I can get the same result 4).
Of course it is sometime senseless to let other people do. If I myself want to go somewhere, it is meaningless that someone else go there instead of me. But if there are wheelchair and social environment available to wheelchair, I myself can move. In this case I can't use my leg but I can go. But on the other hand there are cases that it is not necessary and not desirable to do by myself. If I want something eat but don't want go shopping, I don't need go by myself.
"repair"(of my own body) and "supplementation" (to my body) are equivalent here. But (some part of) disability movement have supported "supplementation" in place of "cure" and "repair". Is it nonsense ? I don't think so, I think it was significant.
I think it important that they have taken repair and supplementation equivalent and changeable, and usage of own power and usage of others' power equivalent and changeable. Before them, e.g. in medical care and rehabilitation, it was expected that firstly someone's body itself must be repaired and he himself must become able to the highest level as possible, after that, he is allowed to be supplemented (Tateiwa 2001a). But they insisted that this order isn't necessary and the problem is what one can get and what one must pay. They have made repair one of choices which should be compared from the viewpoint of cost/benefit.
4 If we think of burden, it is easier to make others do
One point is payment. In Singer's case cost is zero: "miracle drug that would, with no side effects". But, even if elimination is possible, we must usually pay cost for elimination of disability and recovery of function. We should pay to "overcome" disability. And who must pay the cost is the person her/himself. And s/he often has to continue paying after repair. We often forget these facts, but they are important (Tateiwa 2001a). So even if having disability is burdensome, we cannot say that it is always good to eliminate it. And we have to pay the cost not only to be able to do something but also do something itself. If I can do something and I do it, I spend time and make effort.
So in many cases, it is easier to make other people do. For example, if war begins and we must go to war, we may die. But if I don't have to go, it is better for me. If war itself is thought to be evil, no participation itself is good. It is an example of section 3. But, even if we don't deny war, it is better that someone else go to war instead of me. Though this is an extreme case, usually it is easier for me to make other people do 5).
If I say above, some people will resent that it is unfair and irresponsible. I can understand it. And also disability movement has not said such a thing, because it have common sense than expected.
But firstly, returning Singer's statement, elimination of disabilities is grasped as "genuine" benefits, so other conditions are thought arbitary. And Singer himself refered to person using wheelchair. That is to say, supplementation is involved in his discussion. Secondly, to say more positively, as conirmed in section 2, the statement that no disability is itself good is combined with the statement that (now living) disabled people have right to live decent life, so disabled people can get means to live as a matter of course.
5 If we don't stick to old custom, we can get what we want
There are some cases that only the person her/himself can do it or it becomes meaningless if s/he doesn't do by her/himself.
People who can see and/or hear may think that they get something from seeing/hearing itself. For example I am seeing green wood and feeling comfortable. And I, who like listening to music, think it is better to be able to hear sounds. And I may feel pleasure from that I walk with my legs and that I myself drive a car. And I feel so because I have experienced them. In cases of people who acquired disabilities, getting disability is often experienced as a loss, he feels sorry about it. If they have had disability since birth, how do they feel ? They may not want to get new abilities. Or they may think that it would be better to be able even if they have not experienced concretely. And it is not wrong idea itself. But we should grasp some points.
For example in case of eating, sometimes it is easier to do by myself and it is difficult to make up for. Human body is well-made. But usefulness is determined not only by physical conditions but also by social conditions. For example it is advantageous to use popular OS.
And if we seek to imitate original model and think it the goal to be same, we cannot get better than the model. But if we don't think so, it becomes different. We may wear machine which has stronger power than human hand. And if we want to eat the same as "ordinary people", disabled people may not reach the level of ordinary people. But there is other ways to eat. We can eat without folk and knife. We can use pencil with leg.
6 World which is affirmative appears, and it is consistent with that it is disability.
When we say "They can't do", the state of disability is a blank that action don't exist. But in reality there appear other things.
There is time. if I don't spend time to reduce my disabilities, I have time. And I can do something other in that time. And space appears differently. There are differences in catching the world and there are differences of world. For example intellectual disabilities are not merely lack of abilities. There are differences of mode of living, differences in acceptance of the world. They live the world differently. It is related to so-called "impairment", but we should not take it only as dis-ability. Different worlds exist, although it is not separated from other people's worlds. And we can say that as for so-called physical disabilities too 6). We don't need to say that differences themselves are especially important. But we cannot decide which is better and we need not decide it. As for function we can make difference, but function is not the problem here. And the people may get familiar with the world, and may treasure it, it should not be denied.
Furthermore, according to their own ways of touching the world and the world's various appearances, their own ways of attitudes and actions may become formed, and ways of feeling and thinking appear, something in common may appear. The mode in common is distinct from others. So we may call it "culture". And there sometimes appears feeling of sympathy and belonging. If it doesn't bring about exclusion of other people and groups, it is not bad itself, and feeling of sympathy and belonging is comfortable for many people, we may say good that disability cultures exist and continue to exist.
And they live in other world and live other lives. It is good, or it is beyond good and bad. And it is consistent with that it is dis-ability. For example I can speak and listen only Japanese, so if I go to USA, I can't understand what people talk, can't speak, and can't understand signs and newspaper. It is inconvenient. But at the same time I may be proud of Japanese language and/or Japanese culture. Of course in case of learning foreign languages, it is influenced not by physical factors but by social environments. We can use the term "disability" only if physical factors influence, but this is the problem of usage of words. We can say "I can use only Japanese, so I am person with language disabilities in USA." In both cases we have something, but at the same time lose something or cannot get enough. In case of disability in ordinary sense, we can get something often, and at the same time, it is inconvenient and disadvantageous. These two are consistent.
Which should we choose? In reality this is usually out of question. Because we cannot get rid of the state (the state of disability) in reality, we can only accept the world, and enjoy if we can enjoy, and reform disadvantage and inconvenience. Conflict between that disability is culture and that disability is inconvenient doesn't always happen, disability is culture and at the same time inconvenient, so we can seek to make up for inconvenience.
If conflict happens between the assertion that disability is culture and the assertion that disability should be make up for, it is the case that the one eliminates or reduces the other. When it becomes possible to eliminate disability, there may appear conflict between the assertion of elimination and the assertion that disability is culture which should be maintained and reserved so it should not be eliminated. How should we think this conflict?
We cannot give one fixed answer. For example, let's think the situation that we live in inconvenient mountain village. There is some culture with relation to that the place is mountain village. And there is no wide road to cities, it is inconvenient so we try to resolve the problems. It may decrease goodness of the village. But it may not give so big effect, and even if it have some effect, convenience may be chosen. We must pay attention to that this conflict is not between the two which are contradictory each other, but the problem which we should choose between the two which have different attractions or to what extent we take fom the two.
And the problem is who should decide. In case of the mountain village, environment of the village is public goods, social decision is needed, so methods and criteria of decision become problem. What about disability? Body is each one's body. So it seems good that each one decide. But, as I will write below, it is often impossible to decide by oneself 7).
7 Wider the range of choice, the better ?
If I say above, someone would argue against it that it is better to choose. In case of not-disabled people, they can go on foot and with car and with wheelchair, they can choose. Even if one can move with one's legs, s/he can also move with wheelchair and can ask other people to move. And even if he can see, s/he can close his eyes, s/he can choose not to see. S/he can both close and open her/his eyes. S/he can change between ability and dis-ability. On the other hand, when disability exists, there is only the state of disability. Even if we can't decide whether having disability is good or not, is it better that we have possibility to choose? So in this sense it seems good to be able. But we should think carefully here too.
1) : This assertion is that possibility of choice is good, and the possibility is decided by natural and technological restriction. In the case that disability is default value, the reason why we can't choose between ability and disability is that it is technologically impossible to eliminate disability. If it is possible, what happens ? In this case, we can choose between two, so we can change from one to another immediately, so the question of which is better as default value becomes meaningless.
But, 2) : such a pure choice does not exist in reality. Firstly, people are born somewhere which is already existing world and they begin to live there. And the world is where not-disabled people are majority, so it is convenient and good for them. Secondly, people are born with disabilities or with no disabilities, and usually no disability is set as default value, so it becomes ordinary mode. The person live the life of not-disabled people for some time. Even if he can choose, he is already accustomed to the world, so he will feel difficulty and fear to leave there. If s/he can choose, s/he will choose no disability. But s/he did not choose the place he lives.
Then how about the situation that existence of disability is default value, and we can select between the two? But the society which has already existed as environment is for not-disabled people. So, and other reasons, there are cases that they wish to eliminate disabilities. But in this case too, default value continues for a while and people get accustomed to it. People may choose disabilities.
It is always unknown which way is better for me, and I cannot fix at last. Because I live one life after all, I cannot experience both lives in same condition and I cannot decide which is better. I cannot judge even when my life ends.
At the same time this is true of affirmation of disability. If disability is given, I will enjoy the life under that condition, but it is not predetermined that it is better. Advantages and disadvantages are not fixed, they are influenced by environment. No disability is advantageous especially in this society, but not advantageous essentially. it is oversimplified.
8 On the other hand, disability is no good for not-disabled people
When no disability is said "genuine benefits", "benefits" are seen as benefits of the person her/himself. And we saw above that the person her/himself can get benefits from disabilities. But if we don't think "benefits" as benefits of the person her/himself, we can see another story.
If people must assist the disabled person, it is burden for them. If s/he becomes able and do by her/himself, they can escape the burden. In this sense absence of disability is "benefit".
We cannot say that absence of disability itself is good for the person her/himself, but for other people, disability is bad in that it is burden for them and no disability is good. Usually "benefits" are said as benefits of the person her/himself. But it is misunderstanding here. Benefits are benefits of not disabled people. We should understand this fact clearly.
The problem of the statement that no disability is good is that it confuses the situation of disabled people and that of non-disabled people. Interest of non-disabled people is made slide to that of disabled people.
It was said that (A)：disability is negative, but (B): Being disabled people is affirmed, and (A) and (B) are said compatible. By that statement it is thought that (A) is not the statement of discrimination and (A) is justified. But it is doubtful. If I say "I don't dislike you, but I won't assist you", and the person can not live without assistance, it denies his existence. In this sense (A) negates (B).
It is certain that lighter burden is better. But if we accept (B) seriously, we must do what we should do to maintain the existence of disabled people. But, it is the rule and the justice of this society that people have the right to get what they produced. (B) is denied under this rule, absence of disability and elimination of disability become inevitable requests. And that the person can do by himself indicates his value of existence in this society. So (A): elimination of disability becomes heavy and excessive request.
So condition (B) is not satisfied in reality. Then saying both (A) and (B) is only fiction, and not because disability itself is bad, but because condition (B) is not satisfied, disability becomes negative. If means which make up for disabilities don't exist, the question whether disability is good or bad is meaningless and bad joke.
Conversely if (B) becomes realized, (A) becomes not self-evident. But if people miss it and say (A) and assert that (A) and (B) are compatible, it hides facts. We don't need to deny that it is good to be able. Production is needed, and if everybody has no ability, it is not good. It is necessary that some people can produce. But that's all. If people take responsibility, the proposition that disability is bad for the disabled person is not always right. So we should not say that no disability is good.
9 Meaning of "social model"
From above, we can say how to understand "medical model" and "individual model" and "social model".
1) The assertion of social model is significant not because it take the "cause" of inconvenience and disadvantage to society not to the person. It is said that according to medical model and individual mode, one cannot go there because s/he has no legs, and according to social model, one cannot go there because there is no road available to wheelchair. But this understanding is incorrect. As means to move, both legs and wheelchair is useful. If we can use legs or wheelchair, we can move. The problem is not causality.
2) Next, we should think that which means we use to realize something is not the central problem. As I wrote in section 3, repairing one's body and supplementing function are continuous, and it is not fixed whether is better for the person (cf. Haraway 1991 ; Tateiwa 2004b).
If we misunderstand assertion of social model, we take it that it asserts that it is good to correspond by reform of social environment but it is bad to cure and repair it. We don't have to say so, rather should assert in other way. That is, as I pointed out in section 4, we should think what we can get and what we must pay, after that, we should choose.
3) The significant difference between two models is who should take responsibilities (Tateiwa 1997 ; 2004a）。Social model denies that only the individual should take responsibilities and asserts that society should take responsibilities.
1) There are much literature (in Japanese) on this theme. And in the previous article (Tateiwa 2002) I introduced some, but I cannot in this article. See http://www.arsvi.com/0ds/0.htm (in Japanese) and http://www.arsvi.com/0ds/0e.htm (translated to English) and Tateiwa (1997 pp.436-439 chap.9 note.15-22）.
2) "The basic problem is that deliberately the definitions of disability have been raised for examination, denied, tied to the disabled people, and finally, the disabled are denied. To this problem, there is a direction of accepting the denial, facing the improvement, or searching for another direction..., but, as I have already indicated previously, it is an imperfect process. On that ground, conversely, I must say in this fashion of accepting that thing, which has been denied. Like this, a dividing point seems apparent. The fact is that giving rise to this type of choice is the problem, and making it ineffectual is of the utmost importance. Acknowledgement of the disability, as separate from disabled, a part of the total, and a totality itself, is not the problem. The important here is, there should be no need for accepting the denial." (Okahara & Tateiwa 1990 p.162)
3) "When a victim prosecutes his/her being discrimination and claims his/her rights, when one confined within the limits of the category set by the discriminator. But at the same time, for denying the denials, the works of exorcism are needed to drive evil sprits a way--the works of 'be affirmative' and 'learn to like oneself.'"(Tateiwa 1997 p.438)
4) Some (many) people are worried about losing productive population. But I think it is groundless. Rather, in almost all societies, there are enough people who produce goods for all members of the society. As for "advnanced nations", existence of constant unemployment proves this (Tateiwa 2000a ; 2006).
5) Nevertheless it is desirable that each person becomes able to decide his/her own life. One reason is that if s/he let others decide instead of him/her, s/he becomes often controlled by the others (Tateiwa 1999). Self-determinaion is very important, but the ability of self-determination and self-control is not the most important thing (Tateiwa 1997 ; 1999 ; 2000b). Disability movement in Japan have thought from early 1970' and stated that (Tateiwa 1998).
6) Koichi Yokotuka(1935-1978) -- He was a member of a group of people having Cerebral Palsy "Aoi Shiba no Kai(Green Grass Association) ", the first representative of "Zenshoren", a great leader of disability movement in 1970' -- wrote. "Landscape I see is thought to be quite different from that other people, especially so-called non-disabled people see"（Yokotsuka 1975）。
7) Dangers of "culturalism" are two. One is the power of assimilation and exclusion. It may be good to emphasize each culture and to emphasize the differences from other cultures, and isolationism itself should not be criticized, but it sometimes functions oppressively to the people in the group who don't think it important. And although when they are minority they often become victims, it sometimes appears as exclusionism.
Another risk is about the relation with society and social change. Disability exists as culture and individuality. At the same time disability appears as dis-ability. These two are compatible. If we miss the fact, and we only see the former, it may result in denial of actions to build society where disables people can live easily. Of course we can seek preservation of culture and require society to preserve it. But in some cases, as I wrote, conflict may happen.
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