EXTENDING LIFE THROUGH TECHNOLOGY: WHOSE DECISION?

LIFE THROUGH TECHNOLOGY, WHOSE DECISION?

Y.KOSTER-DREESE
Dutch Council of the Disabled, Utrecht, The Netherlands

'The opposite of good is not bad, but much more often "well-meaning"'. With these words, the German professor Klees (1) captured the dilemma of contemporary technological developments. These developments have been given a rather low profile up to now, with the result that the essential process of weighing up the ethical and moral implications has hardly taken place.
That process of weighing up the consequences is of the greatest importance right now, because the developments are in an expensive, explosive phase. It is my opinion that the decisions which we take as a society in relation to, and on the basis of, technological developments, will determine our future: these decisions will shape the face of humanity - literally and metaphorically!

Our subject is 'life through technology', which refers to a specific area of technological development, namely those developments which are related to life itself. The aim is not to focus on the subject of euthanasia, but to ask ourselves questions about the influence which technological developments have on life, both at its beginning and at its end.

What are some of the things that can be done now?
Cloning: producing an identical double by removing cell tissue and then growing it. As far as we know this technique has not been tried out on people.
Breeding chimeras: cross-breeding animals which could not be crossed before. As far as I know this technique has only been applied to animals and plants but not to humans.
The DNA-print: a kind of genetic fingerprint.
The war industry: some industries, and perhaps also governments, are developing genetic weapons. The trick here is to look for ways of changing people's genetic sensitivity.
Heredity diagnosis: most work is currently being done in the field of diagnosing hereditary defects, in particular in the foetus, in new-born babies and in adults who have children or want to.
Predictive diagnosis: diagnostic research into all kinds of other illnesses which are made possible by a genetic predisposition.
Anything else that is being developed in laboratories is out of my sight.

This summary is therefore far from complete, but gives a fair picture of the kind of things that are happening in this field.

If technological developments enable people to take well-considered decisions, then they should be encouraged. I too was taught that prevention is better than cure.
How far should prevention go? I see vaccination for example as a means of equipping yourself to cope better with possible future situations. But you cannot vaccinate yourself against sorrow. The only way you can learn to do so is by experience, and experience is the result of a continuous process of development, in which you discover your own potential and learn to handle your limitations. A society which denies itself such a process strips life down to a mere 'staying alive'.
People think they know what it means to have a disability. This idea is based on assumptions and seen as something frightening and unmanageable. Many expectant parents will decide to prevent the birth of a disabled child on the basis of these prejudices.
No doubt you are familiar with the cry 'I only want the best for my child'. What is 'the best'? The best education? The best partner? The best health? Or is it the 'best' that will fulfill all those dreams that mum and dad never got around to fulfilling?
So what is it that I want - am I deliberately not opting for the best? I do not know if what I really want is, for example, a child with spina bifida. But I do know that there is a line to be drawn which I, and with me the whole of humanity, should not be allowed to cross. And the reason why is that we have shown, as humans, that we do not know when to stop. From spina bifida it is a small step to the harelip and before you know it, it's shortsightedness, and after that red hair is a piece of cake ... In other words, in striving for the best, people make choices without examining the consequences.

I was born with hereditary defects which have quite emphatically shaped my life - a life which I deeply enjoy. My parents did tell me once that, had they known of my future defects, they would not have let me happen. So, whose decision should it be?
The current state of science has created a range of choices which is actually inhuman. Suppose that soon, at a very early stage of pregnancy, people can acquire information not just on hereditary defects but on life chances in terms of future susceptibility to viruses, coronary problems etc. What must we then choose and what will society allow? Will those parents who have dared to want to bring a child into the world with that genetic baggage be forced into abortion, or ultimately sterilisation?
I would like to conclude my argument by citing the following passage: '.. a stronger generation will replace the weaker one, because the life force in its ultimate form will always break the absurd chains of the so-called humanity of the individual and replace it with the humanity of nature, which will destroy the weak, in order to make way for the strong ..' (2)

The dilemma which confronts us is not whether to allow or not to allow the birth of someone with a disability! Our dilemma is: is there a choice? And if there is a choice, who is to make it and according to what criteria?

To sum up, I would like to put three questions to you:
1. Can society qualify the disabled as an unhealthy, undesirable phenomenon to be cured, and which therefore ought to be prevented?
2. You and I know there are a great number of prejudices about people who have a disability. If people are able to decide whether they want a child with a disability, on the basis of genetic information, do you expect society to be sufficiently objectively informed so as to make such a choice, or will people do so on the basis of those prejudices anyway?
3. What means do we have at our disposal to freeze the current developments temporarily at their present stage so as to allow the serious thinking to take place which should have gone on beforehand?

References
(1) Dr. Berndt Klees in the Dutch TV documentary 'Better than God'.
(2) Adolf Hitler in 'Mein Kampf'.

WHICH INFORMATION OBTAINED FROM FETUS SHOULD BE CONVEYED TO PARENTS?

MITSUSHIRO KIDA
Department of Pediatrics, Teikyo University School of Medicine, Tokyo, Japan

In principle it is correct to say that all information obtained about a fetus through amniocentesis should be conveyed to its parents. In actual practice, however, it is sometimes not considered proper to tell the parents the sex of the fetus. Chromosome polymorphism is another area in which it is sometimes considered not proper to inform the parents. Conditions that might result in physical or intellectual retardation, however, such as Down syndrome, are commonly made know to the parents. As such ,concerning certain chromosome-related information, depending on its nature, some information should not be conveyed to the parents. recently researched the actual state of prenatal diagnoses and the personal opinions of those who do such testing, and this is a report on the result of this investigation.

We sent reserch questionnaires to 80 medical universities and 30 medical institutions throughout the nation, inquiring about their prenatal diagnosis activities. Sixty eight responses have been obtained up to the present time. Among them, amniotic fluid analyses are performed at 29 facilities (42.6%), and villus testing is done at seven. Among university hospitals, prenatal testing is performed at 24 of 43 institutions (55.8%).
Checking when such testing began in the institutions that performe it, of 26 respondents three began such testing in 1971, five between 1975 and 1979, 16 between 1980 and 1985, and two in 1986 or later.
The total number of such tests that have been done at 22 facilities is 4896, of this number, in 4662 cases(95.2%) no chromosome aberrations were found. Chromosome aberrations were discovered in 202 cases(4.3%). Among them, an abnormal number of chromosomes was found in 95 cases(47.0%), abnormal chromosome structures were found in 24 cases(11.9%), translocation was found in 60 cases(29.7%), and other abnotmalitis were found in 23 cases(11.4%).
Next we researched the feelings concerning such testing of those who are actually charged with performing those procedures.
Responses were obtained from 53 men (72.6%) and 20 wemen(27.4%). They comprised ten reserchers(13.7%), eleven laboratory technicians(15.1%), and 49 physicians(67.1%).
Fourty-three of those were engaged in chromosome cultivation, and on average they had 9.0 years of experience in their field. Twenty-nein individuals were in charge of amniotic fluid analysis, and had an average 7.3 years of experience.
Concerning their spiritual backgrounds, of 73 respondents 48 said their feelings had not been affected by religeous beliefs. Among those who said they have been influenced by religion, four cited an influence from Buddhism, nine from Christianity, eight from what they considered nonreligious beliefs, and one from Shintoism. Overall in this research, 56 persons(76.7%) were either atheists or without religious influence.

The "homogeneity" of Japanese society includes no specific dominant religion. The procession of life from conception through birth, childhood, adulthood, and death is considered a continuum. Considering that abortion is legal, however, at least until a certain stage of fetal development (after which it is illegal), this can be considerd a "drawing-line issue". Where to draw the line depends on the judgement of each individual.
Questioned as to when a new human life should be protected, 30 (41.1%) said from the moment the egg is fertilized, ten(13.7%) said from the stage of the embryo when the body of a fetus has been formed, and 30(41.1%) said from the time a fetus can be born and survivs.
In Japan a fetus's life is protected by law after 24 weeks of pregnancy. Before that time it is up to the mother herself to protect the life of her unborn child. In this reserch 38 respondents(52.1%) said a fetus should be protected by its parents(the mother and father), 31(42.5%) said it should be up to nature's own processes, 13 (17.8%) said by the overall society or its laws, neine (12.3%) said by-physicians, two (2.7%) said by no one, and one person(1.4%) said by the supreme being, God.
There is a wide dispersal of opinions regarding from what point and by whom a fetal life should be protected, consistent with the range of Japanese views regarding life and death in general. It can be said that in general there is no particular consensus of such opinions.
In everyday clinical situations many pregnant women have great concern about possible fetal abnormalities, and in many cases they would like to have amniocentesis performed to allay their anxiety.
There are groups in Japan, however, that are against such fetal diagnosis procedures, because they believe these tests are premised by thoughts biased toward abortion, including the so-called "handicapped liquidation" idea that handicapped babies should not be born, and such groups belive such thinking will lead to a strongly discrimination-oriented society, Influenced by such opinion from citizen groups, some public medical institutions still do not conduct fetal diagnosis procedures.
On th other hand, abortion, which deprives even a normal fetus of its life, is allowed to take place at will. In light of this, to be against fetal diagnosis, which is only designed to identify the condition of a fetus, is not logical. Also, it is considered that just because some women do not choose to have such testing done, they should still not interfere with the right of others to have it done so that they can then go on to continue their pregnancy or choose abortion.
In this reseach, six respondents(8.2%) think amniotic fluid analysis is not socially accepted, 19(26.0%) feel it is socially accepted, and 47(64.4%) think it is accepted under certain conditions. As such 90% indicated some social acceptance of the procedure.
Regarding individual opinions of the respondents, 50(68.5%) approve of fetal diagnosis for Down syndrome, 20(27.4%) approve of it under certain conditions, and two (2.7%) do not approve of it. Thus 96% overal expressed some degree of approval for amniotic fluid analysis.
Of the 35 people who felt there should be some age restriction placed on the procedure, 27 said it should be 35 hears of age, one each said 36 and 38 years of age, and six said 40 years of age.
The opinion that all information obtained from a fetal diagnosis procedure should be conveyed to the parents was heard from 43 respondents(58.9%), while 25(34.2%) felt such information should conveyed under certain considerations.
In detail, many say the sex of a fetus should not be told to the parents(28"should not",35"should"),and that all chromosome aberrations should be informed (59"should",7 "should not"). All respondents felt that chromosome aberrations that usually cause abnormalities of the genital organ and retarded intelligence should be informed(59 of 59). It was felt by most that chromosome aberrations that are inherited and cause disorders should be informed(57 "should", one"should not"). There was a mixed response regarding informing parents of chromosome structural abnormalities that do not cause difficulties in daily life(38"should",17 "should not"). and lastly, regarding whether parent should be informed only when they ask a specific question, there were also mixed responses(14"only when they ask", 19 "whether they ask or not").
The opinion that the development of technology regarding fetal diagnosis is harmful to mankind was heard from only one person(1.4%), that it should be no cause for worry was heard from 18 (24.7%), and that there is nothing to worry about, though with some reservations, was heard from 43 individuals (58.9%). Thus overall 83.6% of respondents felt there are no drawbacks to the development of fetal diagnosis technology.
Asked about the future of biotechnology, however, six people(8.2%) felt it has a bright future, five(6.8%) said it does not, and 46(63.0%) had some reservations about its prospects. As such,70% have some apprehension regarding the future of biotechnology,
The overall results of this research show that prenatal examinations, such as amniotic fluid analysis, are strongly desired by pregnant women and that they are being rather widely conducted by medical institutes in Japan. However, there is no full national consensus on the subject. This gap between the demand and the overall opinion of society will, if not closed, result in a technology crisis in which there is insufficient education of the public regarding such testing, which will leave many pregnant women with considerable worry and concern. Futhermore, because the homogenity of Japanese society does not involve strong religious convictions, there is a wide divergence of opinion regarding the nature, meaning, and importance of life and death. This also means a lack of debate and concern regarding the ethics of life. Such conditions can play to the nation's disadvantage in an age when biotechnology is progressing.
As a result of this research I strongly believe it is important for there to be an overall societal consensus of prenatal diagnostic testing.

THE ETHICS OF DISABILITY PREVENTION

A PARENT'S POINT OF VIEW

J.BAKER
Down's Syndrome Association of N.S.W.,NSW, Australia

I would like to introduce you to my children, Paul, Mary, Kevin, Angeline, Jim and Penny. Without expensive neo-natal technology, three of these children would not be alive today. Mary was born blue in colour, and not breathing. Revived, she continued to have blue turns, was weak and unresponsive. Kevin and Jim were robust little boys but within hours of birth developed the tell-tale jaundice indicative of toxicity caused by the blood disorder, AbO incompatibility. Within hours of birth, the need for technological intervention to ensure survival was evident for each of these children.
Kevin and Jim received exchange transfusions in their first twelve hours of life. The arrangements were made, I was given permission papers to sign and the transfusions were carried out in rapid succession. At no point did anyone formally ask me if I would consent to the transfusions. It was assumed that of course I would consent.
Twenty-four hours after Mary's birth, it was left to a nursing sister to tell me she had Downs Syndrome - of which I was already aware - then later a paediatrician explained she had a heart defect which would probably need surgical intervention if she were to survive. With some awkwardness he asked if, given my understanding of her condition, I would be prepared to consent to a corrective operation. When I responded immediately that I would consent, he looked very relieved and said that I had made "a wise decision". Since for me there was no decision involved - it was my daughter's life in question - I was surprised at his attitude. He went on to say that many people believe that "when nature presents us with a problem, she also gives us a solution to that problem."
Kevin, Jim and Mary all were in life-threatening situations. Mary also faced a life with limited intellectual capacity. Severe AbO incompatibility untreated in time can cause mental retardation. Why then was the attitude to intervention in Mary's case so different to the attitude in the boys' situation? The answer has to be in what a third party believed to be an "unacceptable quality of life" for Mary. Successful exchange transfusions (even if the procedure had to be repeated a number of times) could prevent retardation for the boys. Corrective surgery could improve Mary's cardiac function, but would not alter the fact of her intellectual disability. Therefore, automatically the boys had the right to technological intervention to save their lives but Mary did not.
Science has presented us with scenarios unimaginable 25 years ago.Faced with the viability of life as early as 26 weeks gestation and the care needed to nourish that life through to independence, society now asks itself whether the effort of providing that sustaining care can be justified. That's where the "killing phrase" (and I use that term advisedly), that killing phrase "quality of life" comes in.
Some children are born so handicapped by virtue of prematurity or physical or intellectual deformity that they could be said to be "born dying". Medical intervention would only prolong that process of dying. Given all the care that humanity, law and international charter guarantees every human being, those children die and we grieve for their passing.
But there are other children born who require special care to encourage their life spark into full flame. These children are children "at risk". They are children whose prospects do not match up with someone else's view of an "acceptable quality of life". Their lives are not worth saving, so some say. Yet triple bypass cardiac surgery may be taken for granted.
Yes, it is true that substantial sums of dwindling national resources go to the provision of life-sustaining medical procedure.
Yes, it is true that many of those assisted to live do not subsequently have a life others of us would want to have.
And yes, it is true that some families cannot cope with their infant's disability and so abandon him to society's care, while others find the fabric of their own lives permanently altered as they incorporate their new baby into their family.
This is the wonderful twentieth century! We greet each new technological advance with delight - we accept as our right the wonders of the age. We are thankful that we live now and not in some other less sophisticated century. But there is a price (no new price) - a price our fathers paid in their generation. That price is the acceptance of the responsibilities that accompany the benefits of our age.
If we are capable of saving the life of an "at risk" baby then we must - it is a measure of our degree of civilization. If we can, and do not, we are saying, "Yes, we want to live in the twentieth century, but we want to abrogate that responsibility for the protection of life that our fathers in more primitive times were strong enough to accept."
Let us look at the risks for the child for whom an "acceptable quality of life" is not anticipated. He may be denied corrective surgical intervention, his medically alleviable illness may not be treated, his life-giving ventilation and monitoring systems may be disconnected, he may be deprived of nutrition to the point of death by starvation and at the extreme he may even be denied liquid and sedated until he dies of thirst. This is happening in our hospitals now. Some are suggesting a lethal injection be accepted as a "humane" alternative to these options.
If these are the risks, who among us would like to face them in our own lives? Who has the right to decide the choice of risk for the very premature or severely deformed baby? Is it his mother, his father, his paediatrician, the social worker or legislator ?
As Mary's mother, I tell you no one has the right to make that decision, to take that responsibility, not even his parents. That child is a human being, whose life is his own, whatever the quality of that life. Who are we, as no more than any other human being, to determine what is the future of that life. If any of us takes that responsibility upon himself, he is assuming an authority, a power to which he is not entitled by virtue of his own imperfections as a human being.
The premature or disabled infant is still an infant, a human being. As such, he is entitled to the fullest protection of the law and the support of every other member of the human race. He is entitled to life and the means to maintain it, food, shelter, family and education.
He is also entitled, by virtue of his disability, to something else, something that we here, and thousands like us, owe him. We owe him our advocacy.
The "quality of life" argument is dominated by those who do not know what it is like to be disabled, dominated by those for whom an acceptable quality of life is measured by material and social achievement. We who are disabled or who have disabled friends, family or workmates owe to those infants our affirmation of the value of their lives. It is for us to show the achievement of the disabled life but more importantly, the enriching contribution that life can make to the community.
It is a great mistake to believe that one can only contribute to society in the active physical sense. After all, what we do in the office, the home, the factory is ephemeral, whether we do it as an able-bodied or disabled person. What counts is what the great philosophies and religions of the world are all agreed upon, and that is the spirit of man. It is this that gives worth to what is basically the daily grind.
It is not enough to say that in extinguishing the life of a blind infant we may be destroying a Milton or an Einstein in a deaf one. In extinguishing the life of any infant we are denying the world the contribution that infant can make simply by being alive, by laughing and loving, hurting and needing, simply being a human being.
It is an old image that society is a fabric rich in patttern and colour. Those who argue that some do not have sufficient quality of life"expectancy to be a thread in that fabric are destroying the fabric itself. If we allow this argument currency and do not take a stand against legislation incorporating it, we will end up with a society which has swapped its coat of many colours for the polyester business shirt.
And that, my friends, is what it's all about - the tailor-made society. If we do not have the courage to say that the child born living is entitled to such support and intervention as is necessary to maintain that life, we must accept the inevitable consequence of aquiescence in his death. If you read the literature, listen to the speakers on the "Quality of life", you hear the classic case of anencephaly, followed by spina bifida, followed by Down's Syndrome. We know that the anencephalic child is a child born dying, but the child born with spina bifida or with Down's Syndrome is capable of life and entitled to it. It is a very short step from the extinction of life for these, to the extinction of life of those who do not meet the criteria of the genetic engineer. If we "prevent disability" at birth, we can certainly"prevent"other imperfections, like my freckles for instance. We could standardise people as easily as we standardise nuts and bolts.
In 1985, Justice Michael Kirby called for "the stone to be lifted" on the subject of the prevention of disability at birth by the extinction of the life of the disabled infant. He made this plea so that a community consensus could be reached and guidelines laid down for the medical management of disabled newborn infants. It is for us to take an informed part in this discussion, a helpful part. It is for us to demonstrate that there is a future for the disabled child and his family. It is for us to provide the support and information needed by the child and his parents to help them come to terms with the realities of their situation. It is for us to ensure that the media is used to the advantage of the disabled and not to their detriment. And it is for us to ensure that those who have the power to make and influence decisions (Doctors, sociologists and legislators) have a true understanding of the capacity of the disabled person to live and enjoy life.
That is what we owe our disabled friends, family and workmates - our affirmation of their humanity. And this is what we owe to society: to declare what the wise have always known, that for me to deny the humanity of another dehumanizes me.

THE MODERN SCOURGE

S. N. GAJENDRAGADKAR
Rehabilitation Coordination India, Bombay, India

Let me at the outset thank you very sincerely for the honour you have done me in allowing me to speak before this distinguished gathering. Vererans in the field of rehabilitation all the world over have gathered here to discuss issues which concern us all, and this is certainly one of them - in fact I make bold to say one which affects humanity most.

I would also like to congratulate the organizers for widening the scope of its concern. Rehabilitation is made to include not only the aural/visual handicaps which we come across every day but even the silent, the unseen and hence most pernicious for that reason. Lives are being plucked even before they get a chance to blossom.

I am a doctor, innocent of the knowledge of medicine, surgery. I am looking at the problem only as a citizen, educated - maybe if you would grant, enlightened - believing very ardently in the equality of man and woman.

This small presentation, I want to assure you, is totally free of racial/colour/geographical prejudices, none is intended and none conveyed. This, however, is a delicate area, and if such an impression is created, howsoever slight, I tender my apology for the same.

1) What is the problem? To put it bluntly, even aggressively: "Murder most faul, as in the best it is, but this most faul strange and unnatural" (Hamlet).

Here, a child yet a foetus is sentenced to death, found guilty for being a girl. Amniocentesis is the judge, parents are the executioners.

2) How does the situation arise? Science in this century has made phenomenal progress bringing succour, happiness, health to millions - a development undreamed of. But it has become a double-edged weapon. Nuclear energy is being utilized for atom bombs, chemistry harnessed to chemical warfare. Like fire, it depends on what you do with it. Man, I have often felt, is the greatest enemy of man. Here in medicine, tests have been discovered, methods have been found to judge the defects, abnormalities in the foetus. This is to give the foetus a chance to win over the defects if possible and to enable it to live a life normal, healthy, like you and me. Incidentally you learn of the gender of the child. It is this latter fact which has been exploited so cruelly, heartlessly, as to put the enlightened to shame.

3) What are the tests? Apart from the dietary restrictions which have been practiced in many countries by women before conception - like taking in excessive salt, alkaline douches to reduce acidity in the stomach to make 'Y' sperm (male) more active, the prevalent ones which have the sanction of medical science are:-

i) Ultra Sonography - carried out during the 6th - 12th week of pregnancy. This is done with inaudible sound waves to project a visual image of the foetus on screen. This assesses the foetus age/disorders. If the scan is correct, sex determination is possible.

ii) Chorion Villus Biopsy - done in early pregnancy.
Here you aspirate a few cells - sucked in by a syringe. The outermost embryonic membrane or chorion develops finger-like projections - villi. Between 7 - 9th weeks of pregnancy, samples are obtained from the vagina and cervix and examined for genetic defects and gender.

iii) Amniocentesis - very common now - done after 14 weeks.
This involves taking fluid surrounding the foetus (which contains foetal cells), and after culturing the cells you know both the gender and any abnormalities/defects. This 20cc of amniotic fluid is taken out by using a hollow needle inserted through the abdomen. This is a pre-natal test, meant to be beneficial, but very cruelly and shamelessly exploited by medical practitioners, with the consent of parents.

iv) Fetuscopy - Directly viewing the baby through the uterine cavity. A lot of advanced work is done by Japan in this field. Animal studies are made but this is yet at an experimental stage.

The good point - in view of the heinous crime this has led to, one is tempted to say, the dangerous point - about these methods are that they are fairly safe and accurate. Tests show 97% accuracy and the risk is 1 - 5 per 1000.

This is an utter injustice to female children - yet to give birth is all the more agonizing for the mothers, who feel guilt at producing a female child. However, sex determination is the man's contribution.... a female foetus is generated when male sperm - X - matches with the female's. The onus is on man but through tradition, prejudice and ignorance the responsibility has been placed upon the woman.

This practice is more relevant in confucian societies - China, South Korea - and countries like India where social attitudes/prejudices have been sanctioned for centuries and become rigid and crystalized - countries which account for almost 2/5th of world population. The "Readers' Digest" - volume 133 of July 1988 - gives gruesome - blood chilling - instances/methods of foeticide: baby girls being abandoned in caves, trussed in sacks and thrown into rivers, garbage bins, etc. China has claimed that this is "making a mountain out of a molehill".......only the distinguished delegates of that country present here can give us a true picture. In spite of the efforts made by the Korean Medical Association, in Korea clandestine tests and abortions are available at the right price.

India, I'm ashamed to say, has also succumbed to this evil practice. In Bombay, which a few years ago had just 3 hospitals, now has many more. Between 1978-83, 78,000 female foetuses were aborted. Out of 8,000 cases of abortion, 7,999 were female. In the Northern States, hundreds of private clinics offering gender-testing sprang up. Unfortunately, the evil practice is not confined to only urban centres - where at least the facilities and sanitary conditions are available - but is spreading to rural areas. Without naming specific communities by name, one can say that societies which are land-owning and the new rich societies who make dowry systems a matter of social practice, are found indulging in this crime almost fearlessly. It is interesting and even heart-warming to find that this is not prevalent down in South Kerala - not so much because of the high rate of literacy, but principally because of the matriarchial system prevalent there, which makes women the owners of land/property. Therefore, they are not a burden. The evil of India is so deep-rooted that daughters of poor parents with no money to pan dowry have burnt themselves in the past, and 2 cases also occured recently.

In Hong Kong, where pre-natal testing is legal, the medical profession has strong ethical standards, restrict passing any information regarding gender. Cases of women aborting foetuses because they are female are practically unheard of ("Readers' Digest"). Japan and Singapore are free of this discrimination.

One can say that education and a high standard of living have blunted the discrimination and thus reduced the evil practice of foeticide.

4) Why does this evil practice still exist?

i) Pseudo-religious superstition still persist - e.g "Only a son can rescue the father from hell".
ii) In earlier agricultural society boys were very useful, in fact being valued like a bull.
iii) The desire for immortality through progeny - the family name must be continued.
iv) In earlier times a boy would live at home and continue to support his parents in their old age. This is, in countries like India, now a myth. The male no longer finds it possible or convenient to support parents - and working girls, perhaps because their awareness of family responsibilities is more acute, support their elderly parents. Some even sacrifice their prospects of marriage by doing so.

It will be seen that most of these reasons, whatever their rationale earlier, have no relevance now.

5) Population Imbalance - is an obvious consequence of this cruel practice.
A study in the "Bulletin of Nutrition Foundation in India" tells us that the earlier ratio of 972 females to 1000 males is now 935 to 1000. As it is, the life-expectancy for females is less than for men, i.e. males 55.2 years as against females 54.3 years. This discrimination sharpens in periods of distress, and the interval between births is shorter after a female is born.

What is distressing to me in this context is the "Ethical Neutrality" or the "callous defence" by some in India, particularly belonging to the medical profession. The argument that it leads to population control is not only cynical but cruel. In India, the main culprit of course is the 'dowry system' which I'm afraid is gradually increasing and in fact is receiving the stamp of social prestige. As a result, what perhaps can be condoned - not justified - after 3 or 4 daughters is now becoming even a 'first enemy'. Apart from demographic imbalances this situation, already grave, will lead to rape, polyandry.

The question, therefore, is what are we to do about it? Are we just going to be silent spectators to the sordid drama - this heinous crime, either shrugging our shoulders or condemning it at cocktail/dinner parties? We can't get rid of our responsibility by passing the buck onto the "Law". In many countries, including India, there are laws - maybe quite stringent ones. But law, I'm sorry to say, has never solved a social evil practice unless backed by movements supported by the educated and enlightened. Through seminars, meetings, an awareness has to be created amongst women and their husbands in every socio-economic group. Correct information about genetic matters must be circulated so that women are not shouldering this unnecessary burden of guilt. The true worth of a female child in different circumstances must be emphasized. More realistic laws must be enacted, and then applied more rigorously regardless of the power or social prestige of the parties concerned.

However, nothing is more necessary than arousing the social conciousness of the general public - particularly the uneducated. Positive efforts must be made not only to decry these occurences but also end prejudice, with an unceasing - in fact, almost religious - fervour and zeal.

You and I, each one of us, have a role to play - a duty to perform. Whether this is prevalent in your country or not, let us unequivocally condemn this evil practice of girl foeticide as a crime against humanity. Let this meeting not turn into a classic dialogue of the dumb. Let us not fail. If we do, history will not forgive us.

EQUALIZATION OF OPPORTUNITIES IN SPORTS, LEISURE AND RECREATION

EQUALIZATION OF OPPORTUNITIES IN SPORTS, LEISURE AND RECREATION

YORK CHOW
Sports Association for the Physically Handicapped, Hong Kong

Welcome to this session on Equalization of Opportunities in Sports, Leisure and Recreation. My co-chairman is Prof. Hiroyake Nakajima from the Department of Sports Science of the University of Tokyo, Japan.

Mr. Wilheim Thiel, the original chairman and chairman of the RI Commission on Sports, Leisure and Recreation has sent his apology for not being able to attend this Congress. As the vice-chairman of the Commission, I was asked

The Commission for Sports, Leisure and Recreation was set up with its specific terms of reference, mainly in providing communication and information exchange on an international basis among individuals and organizations interested in sports, leisure and recreation for the disabled, gathering information concerning programs and research, identifying areas of international study and thus can advise the Assembly and Executive Committee on activities that might be included in the RI program. So far, the Commission has gathered hundreds of contact addresses, 40 members and produced a calendar of events bi-annually. A brochure is also being prepared which will contain all the relevant information world wide in the field of sports, leisure and recreation.

At the last Commission meeting in Insbruck in January this year, we have identified a number of problems that face us.

Firstly, we found that despite the hundreds of organizations and addresses available, many of the contact persons are either unreachable or non-responsive. A questionnaire prepared by Mr. Dressler the Secretary of the Commission only generated 30% replies.

Secondly, despite efforts made by the chairman with the sports governing bodies, there has not been much communication between the commission and for example the International Coordinating Committee. The ICC is apparently in an identity crisis and thus the role is still relatively uncertain at this stage.

Thirdly, it occurs that although sports events and related informations are readily available. Those concerning leisure and recreation activities are very difficult to collect, as these are usually organized in small scale and seldom publicized outside their own specific group. There is also a tendency for most countries to put their emphasis on developing sports activities rather than leisure activities.

With reduction of working hours in the developed countries and increase of longevity due to improved prevention and medical care, it is estimated that about one third of our life is, in fact, spent as leisure time. In places where the disabled cannot obtain opportunities for education and employment, this "leisure time" will dominate their lifespan. Even if we are rightfully proud of the quality and standard of life attained, we should not forget that not all persons can make use of the existing array of leisure activities. To promote the disabled to use their "leisure time" in meaningful and enjoyable activities is the goal of our Commission, which claims that "it is not enough to add years to life but that life has to be added to the year."

To echo the theme of the Congress, that is "Realistic Approaches - Looking Ahead Towards Comprehensive Rehabilitation", I must stress that Equalization of Opportunities in Sports, Leisure and Recreation can only be achieved when the following is realized:

1. To provide accessibility to all sports, recreation and cultural facilities.
2. To compensate the additional costs that were incurred with participation in these activities, such as traveling expensees, getting appropriate equipment and provision of manpower assistance.
3. To change the attitude of the public and the recognition of the needs of the disabled in the field of sports, recreation and leisure.

We have six speakers representing various geographical and cultural backgrounds in this session. They will present their experiences and philosophies on this subject. As all the topics are interrelated, I would suggest that a combined discussion should be conducted at the end of the session, if time is allowed.

EQUALIZATION OF OPPORTUNITIES IN SPORTS, LEISURE AND RECREATION

W.THIEL
Chairman of RI-Commission on Leisure, Recreation and Sports Austrian Workers' Compensation Board, Vienna, Austria

The amount of time we can freely dispose of has steadily been increasing ever since the end of World War II. This is particularly true in industrialized countries. In 1948, people used to work six days a week. Twenty years later the Saturday had become a day off in most countries. Most persons now are entitled to a five-day working week and correspondingly long weekends.
The average length of holidays for employed persons has equally increased. But not only workers and employees benefit from longer leisure time. The major part of the self-employed today, because of higher productivity, improved means of communication and greater flexibility, also dispose of more time for sports, leisure and for cultural activities.
Not only has the average working time been dramaticaly reduced because of major socio-political changes, but the progresses in the medical field have contributed to raise the average life expectancy. At the end of the 20th Century, most persons because of a reduced working time and provisions for old age can dispose freely of about one third of their life. Mankind is now facing a totally new situation. Leisure time and leisure time activities have become a decisive factor in our life. Even if we are rightfully proud of the quality and standard of life attained, we should not forget that not all persons can make use of the existing array of leisure time activities.
Modern medicine can today conserve lifes endangered by accidents and diseases which only a few years ago would have been lost. The persons surviving such accidents and diseases though are often confronted with great physical and psychical restrictions. Some of them have to live with disabilities which provide them with an unlimited leisure time because the working world does not make use their remaining capacities anymore. Those persons can make little use of their leisure time without our help. The RI-Commission for Leisure, Recreation and Sports will therefore not cease to claim that "it is not enough to add years to life but that life has to be added to the years". Society has to be constantly reminded of the special needs of its disabled members. Integration is a continuing process and cannot be achieved through one-time activities. This is why we ask decision-makers in all countries not to forget the area of sports, leisure and recreation in their endeavours for a full integration of disabled persons. The access to sports, to other types of leisure activities and to all installations serving recreation is of special importance for disabled persons. We will only be able to speak of a truly humane society when all areas of life are also accessible for disabled persons.
Our claims should not remain mere theory. The papers to be presented and the discussions will show concrete ways of giving disabled persons unrestricted access to sports and leisure activities.
Nevertheless, in my capacity as President of the RI-Commission on Leisure, Recreation and Sports, I would like to remind you of a few of our demands and put some ideas to the discussion.
1. The removal of architectural and technical barriers at sports facilities, cinemas, theatres, museums, concert halls, hotels, restaurants, in public transport, etc.
Many of the facilities I mentioned are still not accessible to disabled persons. Very often, it would only take a few good ideas and little money to make them accessible to disabled persons also. The Austrian Workers' Compensation Board, the main accident insurance institution of Austria, within its social rehabilitation measures for instance finances the adaptation of sports facilities and has thus given access to sports sites to many disabled persons.
2. Compensation of additional costs for leisure activities of disabled persons by public authorities.
Even if all leisure facilities were free of architectural and technical barriers, disabled persons would still be disadvantaged in some ways. I'd like to give you two concrete examples of this. The sports equipment for an able-bodied skier (skis, shoes, etc.) of an average quality costs about $ 500,--. If paraplegics want to practice winter sports, they will need special equipment - a mono-ski. The special equipment costs three times as much as the normal sports equipment. If blind persons want to go on holidays, they will usually need an accompanying person. The costs of their holidays will thus be doubled. This shows that it is not enough to give unrestricted access to leisure activities to disabled persons. A real equalization of opportunities will only be realized if the additional costs which the disabled persons have to face because of their disability are borne by society.
3. Change of the attitude of able-bodied persons where disabled persons are concerned and recognition of the needs of disabled persons in the field of sports, leisure and recreation.
The relationships between disabled and able-bodied persons are still fraught with prejudices, half-truths and mutual distrust. This is certainly due to a long tradition of segregating disabled persons at schools, at work and in leisure time. Though in the course of the last few years and especially since 1981, the Year of Disabled Persons proclaimed by the United Nations, things have changed, much remains to be done.
From my personal experience as an offical in sports for the disabled, I know that much can be achieved if we create the financial and organisational basis for it. Sports can be seen as an example of the emancipation of disabled persons. In no other area disabled persons have yet been able to more impressively show the broad public their achievements and capacities. In able-bodied sports it is only the victory that counts. Those who come second or third in a sports competition are barely mentioned in the media. In sports for the disabled the victory is also important but there is not just one victor. Because in sports for the disabled it is not only the other competitors that one has to vanquish. The victory over resignation, over prejudices and disadvantages counts much, much more. It is this victory that I unrestrictly admire. I nevertheless do know that sports, even if they have a great importance in a comprehensive rehabilitation, cannot remain the only leisure time activity for disabled persons. Disabled persons should have an unrestricted access to arts and cultural activities, be it as active participants or as spectators, just like able-bodied persons. Many things have been done in this area too. What in my view is lacking, is on one hand the presentation of disabled artists to a broad public and on the other hand the willingness of all persons active in the cultural field to recognize the special needs of disabled persons. What is needed is an improved communication in this field.
We should not forget that traveling for the disabled very often is a real "adventure". Means of transport and hotels are far from all being accessible to disabled persons. Wheelchair users are still helplessly confronted with steps and stairs, blind persons still very often need the help of an accompanying person and people suffering from cerebral palsy still are rejected by fellow-travellers or hotel-guests because of their disability. Unfortunately the examples mentioned are not a mere invention but a sad reality.
We therefore have to keep informing the broad public about the wishes and needs of disabled persons.
Disabled persons can take part in normal leisure activities. What they do need is to be encouraged and not patronized, to receive financial support and not just good advice and to gain recognition of their achievements by society.
Today, we evaluate the potential of a country according to its economic achievements. Growth rate, increase of the national product and stability of the currency as well as the trade balance are the factors on which we base our evaluation. I dream of a future in which a society, a country, will be measured according to the development possibilities it gives its less advantaged groups such as disabled persons, old persons, ethnic and religious minorities. I am convinced that the work of Rehabilitation International and the work of the RI-Commission on Leisure, Recreation and Sports will contribute to bring us one step nearer to the realization of this dream.

COMMUNITY-BASED SPORTS FOR DISABLED PEOPLE TO ENSURE THE SUCCESS OF REHABILITATION

H.J.ROSENER
Federation of German Pension Insurance Institutes (VDR),Frankfurt, F.R.G.

1. The historical origin of sports for the disabled

It was the war invalids among the veterans of the second World War who were the first to get together in groups for sports for the disabled, then called "athletics for the disabled". Yet it is probably true to say that new life has risen from the ruins after terrible catastrophes all over the world throughout the ages. "Solamen miseris socios habuisse malorum" (fellow sufferers are a solace for the unfortunate) is a Roman proverb; one's own suffering is alleviated and lessened by the greater suffering of one's neighbour.

Local sports groups have long since developed into a major organization in war invalid care and also in statutory accident insurance in the Federal Republic of Germany. Sports for the disabled enjoys a long tradition and nowadays involves all the carriers of German social insurance which is organized in different institutions. This is the point of departure for our topic.

2. Sports for the disabled as distinct from popular sports and physiotheraphy

Sports for the disabled, seen as rehabilitation sports, is medical therapy in its wider sense. There are general therapeutic principles which are valid for rehabilitation sports.

Firstly, injury to health and the restrictions in function resulting from it must be so extensive that medical supervision and specially trained coaches are required. The aim is full reintegration in an ordinary sports group.

This is what distinguishes rehabilitation sports from both popular sports for the disabled and from physiotheraphy. The disabled person doing popular sports does not require supervision during the activity; he is and remains handicapped by his disability. Physiotherapy is more strictly function-orientated; it is normally carried out as individual treatment - treatment in small groups remains an exception.

Rehabilitation sports must be indicated for each individual case, prescribed correctly and done under supervision. The exercises are primarily intended to improve motor ability, endurance, flexibility, coordination and - with reservations - strength.

Power and speed are only of secondary importance in sports for the disabled which is not primarily competition and performance-oriented.

3. The physiological and psychosocial function of rehabilitation sport

Rehabilitation sport is intended to produce adjustment reactions of the whole organism by means of specific exercise. Functional or morphological changes lead to greater efficiency, increased stress tolerance and improved mobility. The aim is more economic use of limited resources.

The psychological component also plays an important role. The gain in confidence in one's own physical efficiency lessens fears and inner tension. Awareness of one's health is promoted, confidence is strengthened in group sessions and individual interviews and thus emotional stabilization is achieved. In this way sport functions as a medium to improve compliance with the whole therapy.

4. The special significance of local rehabilitation sport

"Rehabilitation begins at the sick-bed" is a maxim best put into practice in accident insurance in the various organizations which constitute German social insurance. It includes medical, occupational and social rehabilitation. Rehabilitation sport is relevant for all three aspects. However special clinics for interdisciplinary rehabilitative care are normally only available for 4 to 6 weeks' care during early rehabilitation. But rehabilitation for the chronically ill and the disabled is often a lifelong process.

So the success of rehabilitation depends on whether and how rehabilitative measures carried out in medical centres can be transposed to the patient's domestic environment once hospital treatment has been completed. Whether the handicap of chronic illness or disability can be overcome is apparent here, in the patient's social environment, and this is where rehabilitation sport takes on its great significance. Its physical and psychological effects are instrumental in ensuring the continued success of rehabilitative measures in early rehabilitation. What has been taught and learnt to improve one's behaviour with regard to one's health must be continued here without clinical supervision.

Community-based rehabilitation sports groups offer the opportunity of preventing isolation and lethargy. Social and inter-personal contacts are made and friendships are formed in the group. This is the source and the basis for building new self-respect and a changed attitude to life which will have an influence on everyday life in the private and occupational sectors.

5. The structure and organization of rehabilitation sports in the Federal Republic of Germany

There are indication-related rehabilitation sports groups for a number of different complaints and chronic illnesses in the Federal Republic of Germany. There are rehabilitation sports groups for patients with bronchial asthma, Parkinson's disease, diabetes mellitus, multiple sclerosis, certain heart diseases, hypertension, mental illnesses, Bechterew's disease, other rheumatic diseases, for dialysis patients, for wheelchair users and - in cancer after - care - for patients who have had mastectomies, laryngectomies, bone cancer and for stoma carriers.

There are numerous types of organizations which cope with varying tasks, for example a special section of a sports club, a section of a sports club for the disabled, an independent club, groups connected to clinics, university institutes, regional working groups, self-help organizations, to doctors' surgeries and to group practices. This is not the place to go into detail on the theory and the exercises for particular complaints and on the effects that taking part in sports has on the complaint. Here it will suffice to mention the lowering of sympathicotonia in patients who have had cardiac infarcts and who suffer from hypertension, the improvement in blood sugar level and the lowered dose of insulin for patients with diabetes mellitus and the improvement in articular mobility in cases of rheumatism.

I would like to emphasize that although the improvements in the conditions brought about by sports activity are important, they are only part of the positive effects felt. All conditions enjoy improved physical efficiency, mental stabilization and the promotion of social integration in the community as a result of sports activity.

The prerequisite is the willingness of the person undergoing rehabilitation to take part in a sports group. In many cases willingness to do so must first be prompted and this is above all the task of the rehabilitation clinics in the Federal Republic of Germany. They are in a position to motivate the patient during a phase in the illness which is particularly favourable for changing behavioural patterns and to prepare the patient for participation in local rehabilitation sports groups through a suitable personal program of exercises. Motivation through family and neighbourhood solidarity is also important.

In addition to motivating patients, the doctors in rehabiitation clinics are able to prescribe rehabilitation sports if the necessity for participation in rehabilitation sports at home is determined during hospital rehabilitation. Prescribing sports helps maintain continuity in rehabilitation.

6. Deficits

In spite of the fact that there is a network of rehabilitation sports groups which is well organized in part and often set up with great individual involvement there are also deficits in the system.

I would like to mention three areas:

1. The rehabilitation clinics do not make enough use of the possibility of prescribing rehabilitation sports and thus ensuring that rehabilitation carriers will cover the costs. In this respect the doctors responsible should be more aware of the necessity of continuous rehabilitation and of ensuring rehabiitation success at home. Similarly better knowledge of sports medicine is a must, as it is indispensable for a reliable recommendation of therapy.
2. The network of rehabilitation sports groups is not extensive enough yet. Only the groups for heart patients (about 1,700 at present) and associations of rheumatism sufferers are anywhere near the target of nation-wide community care. There are considerable gaps in certain regions for sufferers of other conditions. It is, however, questionable whether it is feasible to set up networks of sports groups for various conditions over the whole country. It should at least be possible to set up groups which allow rehabilitation sport of a more general nature through a range of special exercises and sports and thus guarantee vitally important community care.
3. In general people undergoing rehabilitation do not make sufficient use of the facilities already available in existing sports groups. In spite of motivation and prescription by the doctors at the rehabilitation clinics many disabled people do not take part in sports at home later. The following reasons are given in surveys: there is no suitable sports group conveniently located, not enough time, inconvenient practice sessions, dissatisfaction with the program and the framework, the family doctor advised against taking part although the clinic prescribed participation, worsening of the physical state, a lack of information about sports groups.

Apart from the references to organisational problems the reasons given by the disabled are often a cover for motives which indicate there is a lack of suitable motivation to take part in rehabilitation sports. This is all the more surprising for the fact that many of these patients expressed quite positive opinions of the exercises they were doing during hospital rehabilitation. Here there is clearly room for motivating patients beyond their stay in hospital. In addition to those groups of people who are suitable as mediators it is the family doctor in particular in his role as mentor, knowing his patient best and taking continuous care of him, who is called upon to motivate his patient.

Pilot projects in which social workers pay home visits to patients who have been prescribed rehabilitation sports and have not yet taken part have shown encouraging results.

Let me sum up with the following:

In the past years there has been extensive activitiy both on the part of the State and on private initiative to improve the lot of the disabled. Rehabilitation sports groups in particular make a considerable contribution to the long-term occupational and social reintegration of those concerned. To make reintegration a reality in the lives of the disabled, improved rehabilitation organisation in the community and the stronger motivation of those concerned is a must. It is not new regulations that are required, but more effort on the part of all who are involved in the process of rehabilitation. The recognition of human inadequacy can spur us on to better what is in need of improvement.

CREATIVE ACTIVITIES FOR DISABLED PERSONS

FINN CHRISTENSEN
Viborg Amtskommune, Viborg, Denmark

In the industrialized and specialized world very often people are seen as natures with classified and seperate functions. This characterizes our systems and institutions - and the views on people which is behind the organizations of help and service for disabled persons.

In the Health service people are helped to survive. Programmes of foodstuffs, combating of disease and hospitals are basic elements. Disabled persons will survive too due to this system.
The social system secures basic human needs such as housing, clothes, and food-stuffs.
The purpose of the educational system is to give people the possibility of understanding, to develop and to pass the skills, the knowledge, and the experiences on which each society is based on.
The culture organizations and institutions procure values, lines of action, styles, history, and views on people. They are basic elements in our society.

Those systems show a classification and a mortgaging, too. Primarily people are ensured to survive, then they are ensured safety, and then development due to education. Finally, the cultural function and value are considered.
Classification and mortgaging have limited the knowledge and the interests in values of the cultural aspect as something basalt - also in connexion with rehabilitation of disabled people.

A human being is not just defined with physical and social needs. It belongs to a culture which is decided by history, religion, language, nature, and view of people. Without belonging to a culture it is not possible to experience value and influence. The way of belonging to a culture is to take an active part in independent and self-elected activities. Successfull rehabilitation implies involvement in the culturel life.

Culturel and creative activities are identical. Creativity can be defined as the ability to create something new and original and to carry it out. Creativity builds up self-confidence and personal development.
For disabled persons the possibility of creative activities in connexion with theatres, museums, films, videos, music, dance, and art is important.

Disabled people ougth to be secured,

1. Admission to culture institutions and culture activities.
2. Mobility. Possibility of independent transport and help conc. this if needed.
3. Information about culture events and possibility of helf when taking part in the events.
4. Special activities for disabled persons, especially for mentally and psychical disabled persons.

Participation in creative and cultural activities will secure that disabled people are not just receiving and enjoying but that they are performing, provoking, and taking part in the proces of society, too. In cultural sense the disabled person can take part in developing and guarding peoples'life and the understanding of it due to his/hers special human experiences.

Active participation in creative activities will create understanding and accept both of the difficulties conc. each handicap and the disabled person as a human being with its own values. It will give the possibility of a meaningfull life, too.

This must be the fundation for a succesfull rehabilitation. At the same time creative and cultural activities open new possibilities for the disabled persons. The priority ought to be changed so that the creative and cultural participation of disabled people will be attached greater importance.

SPORTS ACTIVITIES IN THE QUALITY OF DISABLED PEOPLE'S LIFE

- SWIMMING FOR THE HANDICAPPED -

KYONOSUKE YABE
Research Center of Health, Physical Fitness and Sports Nagoya University, Nagoya, Japan

INTRODUCTION
The ancient Chinese in approximately 3000 B.C. used varied forms of therapeutic exercises. The surgeon operated on the arm of general wounded by a poisoned arrow, while encouraging the general to use the unaffected hand in a table game.
Sports activities and physical exercises have played an important role in development of physiological and psychological aspect of children. Children must experience active movement if they want to develop, and lack of physical experience may be a major factor in the slow development of handicapped children. For example, blind children have less physical fitness than sighted children because of their lower level of daily activity.
The most widely used index of physical work capacity is maximum oxygen intake (VO2max), which of mental retarted children (MR) is 60-80% of normal children (NORM). The difference of VO2max between MR and NORM become larger with increase in age. The lower physical work capacity compared with NORM seems to be insufficient physical activieties in daily life. It is suggested from these results that physical training and sports activities of handicapped children are essential for the development of physical fitness.
Organized sports for the disabled in Japan have developed in the field of medical rehabilitation. Since the Tokyo Olympic Games 1964, sports for people with disabilities have become increasingly popular activities. However, they have a few chance to play the sports due to insufficient number of facilities and instructors. The understanding of So-called "no charity but a chance" is needed in order to promote the participation in sports of the handicapped. Here, we would like to speak about swimming exercises for children with developmental disability.

SWIMMING FOR THE HANDICAPPED
Physical activity on land may be difficult for the disabled, but physical activity in the water give an experience of free movements for such children. Swimming is one of the most useful activities for almost every type of the handicapped.

We have two special swimming classes for handicapped children in every Sunday morning at the NAS Swimming School, Kasugai city, which started in 1976. The participants of a class are around 30 cerebral palsied children (CP), and another of around 30 mental retarded (MR) and autistic children (AU) of 3-12 years. Their parents, swimming instructors, medical doctors and exercise physiologists support these classes.

The athetotic CP and CP with epilepsy are quite sensitive to sensory stimulus. Cold water induces muscle hypertonus. The temperature of water in the pool is around 30 , and the room temperature is 1-2 above than that of water. A minimum depth of 80-90 cm is required. The length of swimming practice is 30-40 min for severe handicapped children due to their lower physical fitness, and around 60 min for mild handicapped.

SWIMMING FOR CEREBRAL PALSY
A major effect of swimming exercise is to improve the cardiovascular function and physical work capacity. The buoyancy of water supports the body and it counter-balances much of the effect of gravity. This support helps to induce the relaxation. Swimming exercise is a particularly useful recreational and remedial exercises for CP children.
According to the annual reports of Ministry of Health and Welfare 1986, there are about 92,500 disabled children in Japan and 30% of them are CP children. Therefore, an investigation into CP'remedial sports is required. The aims of CP swimming are as follows: to enjoy the movement in the water; to gain the relaxation; to learn the neuromuscular control and body awareness and balance; to increase the range of the joint movement; to develop the general endurance, muscle strength, power, and agility; to join the group practice and to make friends; to gain the confidence through the fun of sports activity.
First half of swimming class is programmed for habituation of water and for remedial exercises, and in second half the classes are divided into 3 groups according to degrees of severity and swimming performance and the instructors teach them swimming techniques.
Prior to the development of motor function, the psychological training effects are observed. The psychological effects are improvement of behavior, acquisition of patience and concentration. However, long term is required to evaluate the effects of swimming exercises for the handicapped.

SWIMMING FOR MENTAL RETARDATION AND AUTISM
The aims of MR and AU swimming are to gain the swimming techniques and to improve their mental and emotional aspects as they don't have motor disability. For example: to form a line; to swim with helpers in the absence of their parents; to join the group practice; to learn to participate alone in the class.
Swimming program is nearly same as that of CP. A few children have become to be able to swim well. They are swimming in the class of normal too. Our idea of education is not to separate but to integrate all children in training.

WORK INTENSITY DURING SWIMMING EXERCISES
We expect the improvement of motor function and mental development by swimming exercises. It is not effective to give the uniformed program to the handicapped children because of variousness and severity of their illness. To conduct the effective swimming class, special consideration is given to adequate program and work intensity. If we give same swimming programs to all participants, big difference of physiological responses is observed. The HRs can be used as an indirect measurement of oxygen intake, in case of testing the physical work capacity. The the work intensity during swimming practice is decided by record of HRs. Upper trace in the figure represents a severe athetotic CP (10 yrs, girl), lower trace indicates a severe spastic CP (9 yrs, girl). Our special attention is given to the fact that different physiological responses were observed owing to the types of CP when they took same programs.
By means of radiotelemetry the HR responses prior, during, and in recovery from swimming exercises were determined in 8 CP children of 7-11 years of age. Maximum HRs ranged from 128-198 beats/min during swimming class. Mean HRs in the water were 146, 149, and 163 beats/min in the athetotic children, and 99, 105, 119, 119 and 121 beats/min in the spastic children. There is a tendency that HRs of the athetotics were more increased than that of spastic children.
Maximum Oxygen intake (V02max) during swimming class was obtained from two CP children. A severe CP of 6 years boy who was unable to walk showed 0.298 1/min of V02max at the end of class. The Vo2max of a mild spastic CP of 8 years boy who was unable to running was 0.753 1/min during crawl stroke. Higher value for V02max (45ml/kgmin) was obtained in the treadmill walk than in the same age of non-handicapped children (39ml/kgmin). An increased oxygen intake is said to occurred in spastic children during level walk, which means reduced mechanical efficiency. However, our results suggest that higher V02max due to swimming exercise shows significant effects on the improvement of physical fitness.

SUMMARY
It is clear that the development of motor function and improvement of behavior are obtained by the participation in swimming class. Here, our consideration is required to distinguish competitive champion sports from recreational sports. Their physical condition and physical fitness should be considered very carefully when they participate in sports activities.
There is a big individual difference of physical fitness between handicapped children. We have to facilitate the sports activities for the handicapped under the care of health and the safety of facilities.
To promote the sports activities in the disabled people's life, education of instructors and establishment of facilities are required urgently.

THE FUTURE OF SPORTS FOR THE DISABLED IN ASIAN & PACIFIC COUNTRIES

YORK CHOW
Sports Association for the Physically Handicapped, Hong Kong

Due to different geographical, cultural, economic factors and governmental systems, the development of sports and recreation for the disabled varies a lot in the Asian & Pacific countries. Apart from a number of developed countries where the disabled have full opportunity to participate in the leisure activities of their choice, majority of the others are still facing multiple rehabilitation problems. Social prejudice, inadequate housing, education and employment opportunities, transport and access difficulties etc. exist in various degree in most countries. A survey of disabled athletes in Hong Kong in 1986 highlighted some of these problems which are probably common to most of our neighbours.
In most countries, sports movement for the disabled was usually initiated by the medical rehabilitation professions and the disabled community. It tends to be disability category orientated. Only in a few countries are there umbrella bodies which effectively co-ordinate and supervise the development of sports for the disabled. Few Asian Pacific countries belong to this group, and in fact, many still do not have a sports body for any category of disabled that are recognised by their own government.
Although the benefits of sports for the disabled is obvious, few government would put it in the same priority as other rehabilitation service. Sports and recreation is such a natural and integral part of life, and yet, unlike education, housing, employment etc., this well being cannot be expressed in terms of money or numbers. A stronger stimulation to national government is therefore necessary for any development to take off.
The events of international governing bodies have not done much in assisting developing countries. The frequent changes of rules, regulations of sports and classification systems have created a lot of confusion in the recent years. The current International Co-ordinating Committee was not able to fulfil its role in bringing together the governing bodies under one roof.
Promotion of Sports in the Asian Pacific Region has largely depended on the FESPIC Games Federation and the initiation of RESPO and Oita Marathon by the late Dr. Y. Nakamura. By organising participation and competition programmes, developing countries of this region can benefit from exchange of experience and expertise. Technical support, however, is generally still lacking. The Malaysian Workshop organised by the International Fund for Sports Disabled has made an important start in the right direction.
With the coming changes in the ICC, it is also timely to consider the roles of different international bodies in promoting sports and recreation in our region. The following proposal has taken into account the opinions expressed by the concerned organisations and national bodies :
1. Rehabilitation International : As sports in many countries in our region is still closely linked with rehabilitation. RI is in the best position to serve as an information dissemination centre to all rehabilitation organisations who are likely to initiate or promote sports in their countries. Information should include contact addresses, activities and programmes, new forms of sports, and development experiences. With the other commissions within RI, the national governments or ministries should be approached and the importance of sports and recreation be emphasized.
2. The International governing bodies : (Future ICC, IFSD and international federations). They should set up special development committees for promotion of sports worldwide. Rules and regulations of sports should be set up or revised regularly (e.g. every 4 years) and not casually. Technical education and training materials (books, slides/audio-visual, videos or films) should be prepared to facilitate training of technical/medical personnels. Membership fees for developing countries should be kept to a reasonable level to allow more nations to participate in international events, perhaps by granting observer or associate membership status. Regular workshops can be organised with the co-operation of regional or national bodies.
3. The FESPIC Federation : This will undoubtedly play a major role in the regional development. In addition to the quadrennial games, development programmes such as seminars, workshops, invitational games, or even a visiting delegation to demonstrate sports and give technical advice to various countries might generate more immediate and better results. An idea of setting up a permanent village is also being investigated as a long-term option for development.
4. National Bodies or Representatives : Basing on the available resources, facilities and manpower, countries should aim at development of those particular sports that will generate most interest and support. Many sports do not need expensive facilities. They should try their best to join forces with similar organisations in their own country to gain national and international recognition, and thereby technical support from international or regional federations.
In conclusion, it is vital that a co-ordinated joint effort from all the above bodies is essential for the success of this future development.
References
(1) Guttmann, L. Textbook of Sports for the Disabled. Aylesbury Bucks : H M & M Publishers Ltd., 1976 (1979).
(2) Klapwijk, A. Proceedings First Conference on Sports & Recreation for Cerebral Palsy. Copenhagen : CP-ISRA 1982, 1-8.
(3) Lindstrom, H. Basic Principles in Sports for the Disabled Report SHIF. Stockholm : Svenska Handicap Idrotts Forbundett, 1980.
(4) Fang, H. The First International Meeting on Leisure, Recreation & Sports RESPO, 1984.
(5) Nakamura, Y. The First International Meeting on Leisure, Recreation & Sports for the Disabled. RESPO, 1984.
(6) Vermeer, A. Sports for the Disabled - Proceedings of International Congress on Recreation Sports & Leisure, RESPO 1986.
(7) Stewart, M. The Handicapped in Sports, Clinics in Sports Medicine, March 1983.

QUALITY OF LIFE OF REHABILITATION CONSUMERS

H.I.DAY
York University, Canada

Vocational Rehabilitation

Most programs, designed to serve rehabilitation clients, tend to place emphasis on the vocational rehabilitation of their clients and little on other aspects of their lives. They seem to ignore the fact that people with disabilities, just like people without disabilities, have goals and interests in their lives, apart from the work itself.

In common practice we frequently find the terms "rehabilitation" and "vocational rehabilitation" used interchangeably.

Bitter, for example, in an American textbook on rehabilitation, begins by ignoring the differences between rehabilitation and vocational rehabilitation. He defines the former process as "goal-oriented and individualized sequence of services designed to assist handicapped people achieve vocational adjustment" (P. 4). He goes on to state on the next page that "it culminates, if successful, in gainful activity which renders the handicapped person a productive wage-earning and tax paying member of society" (P. 5). Yet, later in the same book, Bitter acknowledges that "there is a trend toward greater emphasis on independent living services for the disabled. The term vocational rehabilitation is gradually being replaced by rehabilitation in legislation, in agency names, and in literature" (P.22). Here, his position seems to be that vocational rehabilitation is only one aspect of the entire rehabilitation process.

But other writers in the field note that rehabilitation is far more than integration of the person with disabilities into the work force. Neff, for example, in the section in his book on the role of work and rehabilitation, develops the notion of a Work Personality (Work & Human Behaviour, 1977). Despite the fact that he is concerned with work, he is really describing a person who is mature, well-integrated and able to act in all areas of life in a manner acceptable to that person and to society; a manner that will bring positive regard from others and a high measure of self-worth to him or herself.

It is thus incumbent upon us as rehabilitation professionals to concern ourselves with the broadest definition of rehabilitation, one that encompasses all aspects of a rehabilitation consumer's life.

It may be that the emphasis on vocational aspects of rehabilitation are primed by two interesting facts. The first is that many of the rehabilitation programs are funded by governments or by financial contributions by the public who see income-producing and tax paying activities as utmost important. A second reason may be due to the backgrounds of the counsellors and their own adherence to the Work Ethic. Counsellors themselves, for example, are working during the process of performing their rehabilitation duties and believe that work should be a valued goal and a highly reinforcing activity in the lives of their clients too.

However the reality is such that we must be cognizant of the fact that there are millions of adults all over the world, people without disabilities, who are not only not working, but may never become workers.

Government statistics in industrialized countries such as Canada and the USA like to report figures that list unemployment at something less than 10%. But these figures are misleading because they reflect only those people who are on the rolls as actively seeking employment. They do not include people who have quit looking, especially those on welfare and those who have disabilities. They do not include women who have worked but left the employment field to work at home. And they do not include students.

In a recent study we conducted, of 151 rehabilitation consumers who were no longer at rehabilitation centres, 100 were not working, nor were they registered with any employment office. They had never managed to get a job and 66 of them said that they didn't want to work or couldn't work at all. Of the 51 who were employed, 42 were working only part-time.

It seems therefore pertinent to recognize that while vocational rehabilitation may be the preferred goal of the rehabilitation process, it must not be the only goal lest we fail a large number of clients by trying to force them into the workforce. Rehabilitation, instead, must place much more emphasis on a life without work, but a life with a reasonable quality.

Quality of Life

The concept "Quality of Life" (QOL) is a recent concept that has become overpopularized to the point where everyone feels that it must be included somewhere in their speech or writing. And, just as with other overpopularized concepts, its meaning is unclear, its history obscure and it lends itself to overuse, sensationalization and misinterpretation.

Research into the origin of the concept fails to identify its beginning. It appears to be a product of the post-WWII era and seems to have originated with economists and people concerned with the "nation's welfare". At first, quality was clearly related to objective characteristics of national life: economic growth of the nation, consumption, adequacy of housing and other resources, as well as negative indicators such as pollution. The term was used to measure aspects of a nation's welfare in order to compare present with previous levels (since QoL measures seem to have been to be a wholly American invention at first). Then, social scientists in other countries began to measure the QoL in their own countries, using the U.S.A. as the criterion for comparison.

As a concept that reflected objective areas of life, it was measured by counting such things as crime statistics, unemployment levels, housing, education and health care of the people. Some of these were considered to diminish the quality of human life and others to enhance it.

But, in the seventies, sociologists and psychologists contended that the relationship between objective conditions of life and subjective feelings of well-being is not strong and may, in fact, be quite tenuous. They argued that it is clear that expectations must be a determining variable in the measure of QoL.

This trend is reflected in a more significant definition of QoL. Szalai (1980), for example, equates the QoL question with the introductory question of "How are you?". He argues that to study quality of life is to ask people how they feel about their present lives, or possibly about the whole course of their lives. He goes on to say that "after having elicited only some such overall answers like 'tolerably well', 'fairly miserable', or 'I feel quite happy', the interviewer may proceed further by asking why the individual respondents feel the way they say" (P. 15).

Thus he studies the indicators of persons' QoL by identifying factors or domains that they consider to contribute to their own personal well-being; health, jobs, financial situations, marriage, the quality of their environments, the political situation, etc. Listings by different people will certainly vary and the weight they allot to various domains are individual. But all of the components contribute, to some extent, to the response to the "How are you?" question.

Students of Quality of Life tend to resolve differences by presenting the interviewee with the single question "How satisfied are you with your life at present?" rated on a 0 - 10 scale. Results show that the question is meaningful and reflects a reasonable expression of reflective self-evaluation. In fact, a modification of the same question has been used in order to examine the quality of the other domains; work life, family life, etc., comparing in this way a large number of areas, of the interviewee's life.

Report of studies

I have conducted three studies of Quality of Life, leisure and work, with people with disabilities in the past eight years. In each of these studies. a portion of the interview was designed to identify the level of satisfaction with life in general and their hopes for the future.

In the first study, in 1980, 151 rehabilitation consumers, two years or more post-rehabilitation were interviewed. In the second study (1985) 80 clients in rehabilitation workshops were interviewed, and in the most recent study (1988), 62 clients, in the process of workshop rehabilitation, were interviewed.

The respondents identified themselves as physically, emotionally, developmentally and/or socially handicapped but in the analyses to be presented here, no significant differences among the types of handicaps were found. Nor were there differences across the three studies, respondents who were no longer in rehabilitation programs, for whatever reasons, responded similarly to clients currently in rehabilitation programs.

A number of studies of the Quality of Life of Canadians had been conducted at York University in Toronto and the results of the 1981 study were used as a comparison group for our three studies. Tables 1 and 2 compare the results we obtained with the 293 people in our 3 studies with the 229 randomly obtained sample of Toronot.

Table 1 Happiness and Depression

*p .05

Table 1 shows the difference between the two groups on three questions of happiness and depression with life in general. Over 20% of the rehabilitation sample are "not at all happy" with their lives, compared with 7.4% of the Toronto sample. Over 42% enjoy life only "now and then" or "rarely", compared with 23.6% of the Tononto sample. Over 20% are often in low spirits or depressed, compared with 4.4% of the Toronto sample.

The responses on these three questions neatly parallel the single question of satisfaction with life at present. In Table 2

Table 2 Levels of Life Satisfaction

* p < .05

we note that the rehabilitation sample is significantly less satisfied with life at present. However, the rehabilitation samples is clearly more optimistic about the near future (2 years hence) expectancy of a more satisfying life increasing significantly, while that of the general Toronto sample decreases significantly.

Long term optimism is, however, approximately equal, both groups expecting to rise to almost 9 of a possible 10. We might account for the decrease in immediate expectancy in the Toronto sample by pointing out that 1980-81 was a time of weak economic conditions and higher unemployment. But these facts did not affect the rehabilitation consumers who were interviewed in 1980 (N = 151).

It seems clear that these three samples of rehabilitation consumers are less happy and satisfied with life than the general population, but somehow, without any basis, cling to the hope that the future will be bright. But are we serving them in the most appropriate manner for their needs?

When questioned about their levels of satisfaction in the various domains of their lives, we see the following data in Table 3. The levels of satisfaction for each domain are

Table 3 Levels of Satisfaction on Various Domains (1988 study)

* p < .05

presented in descending order. It can be noted that the rehabilitation consumers are most satisfied with family and social aspects of their lives and least satisfied with their income.

But of relevance here is that they are relatively dissatisfied with the quality of their leisure experience. Moreover, the domains of work and of leisure correlate higher with overall satisfaction than do the domains of family and friends.

If we are to provide the best rehabilitation possible, these data make it clear that we must include in our programs a concentration on optimal use of leisure time. We must recognize that a majority of rehabilitation consumers will never have fulltime gainful employment that gives them a feeling of achievement and self-worth. Instead we must deal with the quality of their leisure lives, to make these clients able to enjoy the tremendous time they have on hand with little income and few skills in trying to make this time meaningful and rewarding.

IMPACTS OF SPORTS GAMES FOR THE DISABLED

TETSUHIKO KIMURA
National Rehabilitation Center for the Physically Disabled Saitama, Japan

Since the Tokyo Paralympic Games, which were held in 1964 following the Tokyo Olympic Games, more and more physically-handicapped individuals in Japan have been participating in sports. The Japan National Sports Games for the Disabled have been held annualy since 1965, and there will be a 24th meet this October in Kyoto. By participating in these activities, the physically handicapped will be motivated to join in the mainstream of Japanese society. At the same time both national and local governments have taken measures to respond to expanding needs deriving from the reinforced motivation for social participation on the part of the disabled. Moreover their participation in sports has played a major role in deepening average citizens' understanding of the welfare of the disabled. In my paper I intend to evaluate and report on the impacts of the National Sports Games for the Disabled.

Evaluating the Sports Games

In the medical field sports originally were used as means to rehabilitate functions of the disabled with remarkable results. They also were effective not only in maintaining and reinforcing their health but also in setting up a basis for their social participation. Through the sports games mentioned earlier as well as annual tournaments in individual sports held by various organizations, the effectiveness of rehabilitation have been demonstrated.

A. Effect of sports on the policies for the handicapped
The disabled used to be virtually isolated from society not going out of their homes and institutions. But, now, by participating in sports they have come into the open to join with other citizens, which has led to their sound social acceptance. Consequently national and local governments have become able to expand programs to promote their social participation. While the 1981 International Year of the Disabled Persons gave a great impetus for the governments to implement various programs for the handicapped, sports games led to general measures for the disabled resulting in the enactment of laws such as visiting centers for the handicapped in 1972, model cities for the handicapped in 1973, compulsory education for every handicapped child in 1979, distribution of self-help devices, etc.

B. Impact of sports on the self-awareness of the disabled
A questionaire has been sent to six of the prefectures which sponsored the National Games for the Disabled within these ten years. Five responded saying that sports have been one of the best tools to promote social participation by the handicapped. One did not answer. Now, what would the reaction of the disabled themselves be? Of 29 respondents who have participated in the national games and are still playing sports, 6 say their selfawareness has changed; 9 unchanged; and 14 undecided. Thus fewer samples have experienced a change in self-awareness, which suggests that their social participation has been achieved rather naturally and spontaneously.

C. Effect of sports games on the citizens' awareness
The above mentioned five prefectures state that the sports games have had a very good effect. An attitude of acceptance is seen more and more among the citizens and discrimination against the handicapped is being reduced. However, seen from the point of view of the disabled, few indicate an improvement in the citizens' awareness. Many say the acceptance is due mainly to their own efforts to participate rather than to a better awareness on the part of the citizens.

D. Awareness on the part of the local governments
Five prefectures say that they have conducted serious discussions on their employees' attitude toward the handicapped, resulting in a number of policies and measures. However, seen from the point of view of the disabled only 3 out of the above mentioned 29 say that there has been a clear improvement in the employees' attitude, while 9 indicate a reversion to the attitude preceding the games. Seventeen are undecided. It is curious to note the difference between the view of the governments and that of the handicapped.

E. Effect on welfare policies
In the above mentioned 6 prefectures and other 19 which have never sponsored the national games but have participated every year, officials say that sports games have had a favorable impact over welfare policies. Through these games the disabled and the nondisabled had increased opportunities to know and understand each other, which has made the work of welfare officers easier. On the other hand, the 29 handicapped individuals placed more importance on the increase of facilities and assistance for their social participation.

F. Impact on medical rehabilitation
Of the 29 disabled persons who have participated in the national games, 24 say that from the viewpoint of medical rehabilitation the games had a very good effect. Five are undecided. As to prefectural governments, all which have sponsored the national games and 18 out of the 19 which have not sponsored them say that there has been a very desirable effect. The main objective of the national games remains to be to test the results of rehabilitation.

G. Effect on socio-psychological rehabilitation
It is widely accepted that participation in sports is an effective way to social participation. The same is true with the rehabilitation of the disabled. Of the 29 indivuals 20 say that there has been a beneficial sociopsychological effect; 7 undecided; and one a negative effect in terms of accepting disability. On the other hand, none of the prefectural officials doubt the socio-psychological effect of sports games.

H. Evaluation of sports games by "unexperienced" prefectures
Even though a prefecture is yet to hold the national games on their home turf, it has always sent out a team every year. Thus the officials know well what kind of effect can be expected of the games. But the difference between having held the games and not having done so is that the citizens have not been exposed to the issues and problems of the handicapped. They are not fully aware of the needs of the disabled. However, all the officials, "experienced" or "unexperienced," recognize the effect of sports and games on welfare policies and measures.

Conclusion

To achieve the slogan for the International Year of Disabled Persons: "Full Participation and Equality," it is necessary to promote sports among the handicapped and to create opportunities for the disabled and the nondisabled to know and better understand each other. Sports undeniably are an excellent tool to expand awareness for welfare with great repercussions. Thus I urge you to attend the sports games for the disabled if you have never done so before. Then you will see what I mean. Seeing is believing.

SPECIAL NEEDS POPULATIONS

THE DRUG AND ALCOHOL DEPENDENT

SPECIAL NEEDS POPULATIONS

THE DRUG AND ALCOHOL DEPENDENT INTRODUCTORY ADDRESS

T.G. GARNER
The Hong Kong Society for Rehabilitation, Hong Kong

In introducing the topic for the session this afternoon, I am mindful of the regrettable fact that over a period of many years, despite the efforts of governments, law enforcement agencies, members of the medical and nursing professions, members of specialised agencies and millions of concerned ordinary people, the problem of the drug and alcohol dependent is still with us. What is more disturbing is that the problem appears to be growing in several areas around the world.
Why, we must ask ourselves is this so? Surely it is not due to a lack of effort, at least in some countries, neither is it due to a lack of recognition of the difficulties involved. It could be, and I believe this to be so, that in the years gone by we were only dealing with what was found on the surface. More recently we have begun to discover the depth of the problem, the magnitude of which had not previously been realised. This has come about due to an increased emphasis on international cooperation, a greater awareness on the part of governments and communities that the resulting implications, irrespective of politics or religion, pose a serious threat to stability and progress and the effort put in by the kind of people represented here today, people who care.
I assure you that in attempting to put the situation in perspective I am not trying to paint a picture of gloom and doom, in fact far from it. That this meeting is taking place in Japan affords me an ideal opportunity to highlight as an example one splendid achievement in the fight against drug dependence which occurred in this country, mainly in the 1960s.
In a report* dated November 1972 Mr. Shiro Nabarro, a member of the House of Representatives and Chairman of the Cabinet Commission on Narcotics Problems, said "When the Korean War broke out in 1950, large amounts of heroin and morphine began to be smuggled into Japan by some US servicemen and others. From 1960 to 1963 numerous narcotic addicts provided a market for organised illicit traffickers. The situation got so out of hand that gangsters brazenly gathered on street corners in large cities such as Tokyo, Yokohama, Kobe and Fukuoka, where narcotic addiction had become the source of all social evils."
He went on to say that the nation would have perished unless something was done and as Chairman of the Lower House-Labour Committee he, along with a gentleman by the name of Mr. Tsusai Sugawara (whom I knew personally) worked out counter measures based on proposals put forward by Mr. Sugawara. The latter eventually formed an association to fight the three evils in Japan for which he became very well known, if not a household name.
The new policy included the following points:

1. To destroy the smuggling routes.
2. To make the penalties more severe, including life imprisonment.
3. To appeal to the general public for cooperation by enlightening them into the realization of the misery of narcotic addiction.
4. To commit narcotic addicts to treatment centres and cure them at government expense.

Just about now you are probably asking yourselves why am I telling you this, afterall the points in the policy outlined are virtually followed in most countries today. The answer is very simple, the policy worked and worked well. Heroin abuse which had become a very serious threat to Japanese society was virtually eliminated in a very short time. The proof of the efficiency of the programme implemented at the time lies in the situation today, some 16 years after this report was published. Although I have not checked with my Japanese colleagues at the time of writing, I will be very surprised if the total number of heroin addicts in Japan reaches a double digit figure because two years ago it was only five, out of which three cases were to be found in Okinawa. Similarly about the same time or perhaps a little before, in the Republic of Korea, the authorities discovered a problem of methadone abuse and just as in Japan the Government launched a multi-pronged programme which was also successful. This resulted in the closing down of a number of pharmaceutical outlets which were producing methadone. We hear so very little about successful achievements in this field, at least on this scale, yet they are there, and it is good to remind ourselves about them.
From time to time I remind myself of the old saying "familiarity breeds contempt" but when applied to the area of alcohol and drug dependence, it can be changed to "familiarity breeds toleration". For instance, if you examine the case of preventive education aimed at preventing youngsters from electrocuting themselves in the home, you will find that it is one of the best preventive education programmes in the world. Knowing the danger of instant death, parents will go to any lengths to educate even wee toddlers on the danger of touching electrical sockets and the back of television sets etc., often with a lengthy explanation. However, many of those same parents will return home after a hard day at the office, or a shopping spree, go to the refrigerator for a beer or mix some form of alcoholic drink. Should they have a headache, then instead of a drink, they will go to the medicine cabinet for some aspirins. The drink or aspirins they will proceed to consume in front of the same children without a single word of explanation. Under such circumstances should we really be surprised, if at a later stage, when the opportunity presents itself, some of these children will not say NO but go on to experiment with drugs, alcohol, or both?!
Finally I would like to say that I hope that while you are in Japan you will have an opportunity to meet some of the many voluntary (social) after-care workers for which Japan has become renown.
I now look forward to hearing from our distinguished speakers.

Reference:

Narcotics 61-72 Post script by Author Kazuo Kenmochi, Jitinipposya Company.

ALCOHOLIC REHABILITATION IN JAPAN

NOBUKATSU KATO
Tokyo Metropolitan Matsuzawa Hospital, Tokyo, Japan

Yearly alcohol consumption has increased about 1.5 fold during the last 3 decades in our country. In contrast, the number of alcoholics has increased about 5 fold (Table 1). But the number of alcoholic inpatients in all the

Table 1 Estimated Number of Alcoholics in Japan

mental hospitals has increased about 1.5 fold during the last 2 decades (Table 2).

It is obvious that the treatment and rehabilitation of alcoholics has become an important and serious social problem in our country.
Over the past 20 years not so many psychiatric hospitals have developed special alcoholism treatment wards. Now there are only 2 national psychiatric hospitals, 2 - 3 prefectural public hospitals, and 10 - 15 private psychiatric hospitals that have special treatment wards for alcoholics.
In 1963, The Ministry of Health and Welfare established a special treatment ward for alcoholics in the National Kurihama Hospital in Kanagawa prefecture. The "Kurihama treatment method for alcoholic" was started and spread to other special alcoholism treatment facilities.
An alcoholic is admitted to the hospital on condition that the patient has the motivation to treat his (her) disease and stop his (her) drinking. The length of stay in the hospital is usually 3 months. A short treatment period is as effective as a longer one and combined group psychotherapy and occupational therapy are being used following the alcoholism rehabilitation program (ARR).
A follow-up study was made by our hospital staff (1986)1) about 128 alcoholics (only male patients) who were admitted to our hospital from 1984 to 1985.
76% of the patients carried out all ARP activities, but 24% of the patients dropped out in the middle.
The prognosis of the ARP group was investigated one year after discharge from the hospital, and the result showed only 7% of patients had good results, 12% showed moderate results, 68% showed bad results, 4% died and 9% unknown.
Many alcoholics are isolated, homeless or jobless and so it is very important to continue their care and support to guarantee good results.
In spite of the need for facilities in the community for transitional adaptation of alcoholics, we don't yet have halfway houses or vocational rehabilitation facilities for alcoholics.
So we advise the patients to attend the self-helf group (Danshukai - a Japanese form of AA), AA meetings in the community or outpatient clinics in the hospitals.
One more follow-up study was made by Dr. T. Noda et al (1988)2) about 328 alcoholics (312 males and 16 females) living in Takatsuki City for the period 1972 to 1983, where self-helf groups were started and supported by the community council for alcoholics.
The report pointed out that the most important factor relating to a good rehabilitation results was the patient's attendance in Danshukai activities after discharge from facilities specializing in alcoholics.
The report found that the ten-year relative survival rate of the male alcoholics was 66.3%, and the survival rate of the self-helf group members was 83.3%, where as the non-member rate was 52.6% (Fig. 1).

For helping patients adapt to their living environment, public health center in Setagaya-ku started an Alcohol Problem Consultation Clinic in 1983 to meet the needs alcoholics and their families.
Consultation was based on group therapy organized by Dr. S. Saito et al (1988)3). Participants included the alcoholics, family members, Danshukai and AA members, public health nurses (PHN), social workers, hospital care workers, and psychiatrists. All participants were treated as individuals with equal rights and the meeting was held once or twice monthly. The content of each meeting was not decided before hand, but was based on the content of the previous meeting and on day-to-day evoluation.
Thus, a network of professional staff members of various institutions is built up and a supporting system for alcoholics is formed.
When the recovery records of the participants are analysed, 45% showed good results. These results reflect the effectiveness of the comprehensive function of the clinic, which lies not only in the therapentic functioning of the meetings, but also on the gradual establishment of a community network.

References

1. Kobayashi, I., Okito, K., Miyasato, K. et al. A follow-up study on hospitalized alcoholics treated by the residential alcoholism rehabilitation prgrammes. Jpn. J. Alcohol & Drug Dependence., 1986, 21 (supple), S240 - S241.
2. Noda, T., Kawata, A., Ando, J. et al. Survey on the actual condition of alcoholics in a satellite city - Takatsuki City - and a follow-up study - In relation to a community support system. Jpn, J. Alcohol & Drug Dependence., 1988, 23, 26-52
3. Saito, S., Noguchi, Y., Ikegami, N. Report on community based program at Setagaya Health Center. Biomedical Aspects of Alcohol and Alcoholism (Kamada, J., Kuriyama, K. and Suwaki, H. ed.) Aino Hospital Foundation. 1988, 165-175.

THE COOPERATION OF SOCIAL SECURITY INSURERS IN THE REHABILITATION OF ADDICTS

HANS-JOACHIM RORLACH
Federal Insurance Institute for Salaried Employees, F.R.G.

Aid to addicts is an essential activity for Public Health also in the Federal Republic of Germany. The information about and prevention of the dangers of dependency on addictive substances (alcohol, drugs, medications) is largely the responsibility of the society as a whole. In the matters of therapy and regabilitation of addicts, however, a decisive share of this responsibility falls on the social insurers. The pension and health insurers and their associations in particular have considerably extended their work and cooperation in this sector over the past two decades.

The beginning of this development was marked by the recognition of the dependency on addictive materials as a disease, as defined by the health insurance law. Not until 1968/69 through several rulings of the German Federal Social Court (BSG), was there a definitive legal decision stating that the treatment of addicts in hospital care was included in the responsibilities of the public health bodies. The addiction itself was thereby recognized as an irregular physical and mental condition which manifested itself through loss of self control and through pathological dependence on addictive substances; i.e. through being "no-longer-able-to-give-it-up." Since this ruling, addiction can no longer be precluded from the health insurers' range of services as a consequence of self-inflicted irregular health pratices.

It was thereby clear that measures of medical rehabilitation would now come into consideration for addicts; that is, those medical efforts targetted at long-term behavioural changes and at reintegrating the individual into a profession and society, beyong acute therapy. This conclusion became of particular importance for the cooperation between the health and pension insurers.

That is to say, since October 1974, the health insurance institutes in the Federal Republic of Germany have also been the insurers of medical rehabilitation, together with the pension insurers who have been active in this area from the very start. As a result of the legislators' allocation of responsibilities, the question in the area of addiction arose as to the demarcation between hospital care and medical rehabilitation. In addiction, there were questions to be answered about the cooperation between the health and pension insurers, particularly in the interest of the smoothest possible transition from acute therapy to rehabilitation.

The treatment of pathological drunkenness (alcoholism) is not only the responsibility of the health insurers but also of the pension insurers. The leading federations of the two branches of social security negotiated on November 20, 1978, a recommended agreement for the cooperation between the health and pension insurers on the subject of addict rehabilitation (the Addiction-Agreement). This agreement came into effect on January 1, 19179.

The Addiction-Agreement regulates the responsibility and procedure for the provision of in-patient measures for alcohol, drug and medication addicts, where the services of both the health insurers and the pension insurers comes into consideration. Pragmatically, it assigns withdrawal (or detoxification) to the scope of activities of the health insurance as a general principal, whereas the denial phase falls primarily within the scope of the pension insurance. It aims at a speedy initiation of these measures and at the smoothest possible transition between the two phases of therapy. The most important pre-requisites for the denial therapy, as with the withdrawal therapy, which precedes it inthis therapy-duo, are determined by the Agreement:

• the well-founded chances of success of the measures
• the willingness to be treated or the motivation of the patient,
• the possibility for therapy in a qualified institution.

The chances of success and motivation are judged on the basis of an expert medical opinion and on a social report. Special instructional pamphlets were developed especially for this purpose.

Therapy in a qualified institution is ensured by means of occupying only those institutions that fullfill the "selection criteria" which are jointly determined by the partners of the Addiction Agreement.

The necessary documents of procedure have been compiled by the health and pensions insurers in close cooperation with doctors, scientists and experts in the field of addiction therapy.
The Rehabilitation procedure, according to the Addiction Agreement, is initiated through a proposal to the pension insurer. The pension insurer than decides upon the proposal forthwith, and it necessary, initiates the denial therapy, also informing the health insurer of the decision. If a withdrawal therapy is necessary before the denial therapy, the health insurer initiates this after agreeing to the beginning and length of the withdrawal therapy with the pension insurer.

The Addiction Agreement, which includes the criteria for the selection of the denial institute, not only considerably improved the initiation procedure, but also the denial therapy itself. Today, it is most often the case that the rehabilitation of addicts is carried out quickly and smoothly and in qualified instutions.

This cooperative work was developed for the in-patient area and practised successfully for many years by the Rehabilitation insurers. In the ensuing years, the leading associations of the health and pension insurers developed, in addition, an overall concept for the rehabilitation of addicts. In doing this they were able to rely on comprehensive literature about help for addicts and on the cooperation of many authorities from the scientific and practical operations area. The overall concept of May, 1985 describes the following phases of an integrated overall therapy (without taking into account provisions for responsibilities) and it should thus contribute to their realization:

• Contact and consultancy phase (including Motivation and diagnosis)
• Therapy phase (withdrawal and out or in-patient denial)
• Post-therapy care phase (stabilization and safeguarding the success of the therapy).

assumes that addiction illnesses vary greatly in their origins and effects.

It describes in detail the services and institutions, as well as their allocation of personnel, that are active in the different phases.

This overall concept contains a thorough overview of the service options for the care of addicts. At the same time it serves as a foundation for the further consideration of the health and pension insurance. That is, consideration as to whether and to what extent they can improve upon their sub-areas of responsibility for the care of addicts, within the valid and legal restrictions, and to what extent they can contribute to the overall therapy.

In the meantime, the leading federations of the health and pension insurers have already taken a first step towards the realization of the overall concept. In March 1987, they concluded a recommended agreement for the support of post-therapy care for addicts after their in-patient denial therapy (the Recommended Agreement on Post-Therapy Care). This framework-agreement came into effect on July 1, 1987 and is supplemented by regional agreements.

The health and pension insurers value post-therapy care as an important function which quarantees successful rehabilitation and the achievement of long-term abstinence. The inclusion in self-help and abstinence groups is of primary importance in this case. However, additional, or more extensive, professional care may be necessary for the stabilization of the personality and to reinforce the motivation.

The recommended agreement for post-therapy care forsees a proportional support for the claims made for out-patient post-therapy care in institutions of addiction, consultation, and therapy following the in-patient denial therapy. The support consists of a reimbursement to those institutions where single and group psychotherapy sessions were carried out as a part of the post-therapy care. Generally speaking, the support is limited to a period of six months of post-therapy care.

The support for out-patient post-therapy care requires that the institutions for post-therapy care work according to a scientifically based concept of therapy and are willing to cooperate in evaluating their effectiveness. Moreover, they must have qualified specialists at their disposal. This means they must have social workers and/or certified psychologists with additional training in the areas of addiction, or psychotherapy. Finally, the post-therapy care institutions must cooperate with physicians who have experience in the treatment of addiction.

The cooperation between pension and health insurance in the rehabilitation of addicts will need to be further developed in the future. The out-patient denial comes into consideration as the next step for the realization of overall concept. This part of the therapy phase within the overall concept has not to date been sufficiently investigated as to the possible provisions of the social security insurers. This first urgently requires, according to the Addiction Agreement, that in-patient denial therapy cannot be provided if the addict can be successfully treated as an out-patient. That is to say, the out-patient treatment and denial takes precedence over the in-patient denial. It presupposes, however, that the addict is not only sufficiently motivated, but is also socially integrated and free from serious disturbance of a mental, physical or social nature. Consequently, according to current experts, out-patient therapy for drug addicts is not advisable. The thoughts of involving the health insurance, and possibly also the pension insurance, in improving the out-patient are of denial are, for the time being, oriented exclusively to alcoholics.

In sum, I would like to close with the following observation: The rehabilitation of addicts is an important area of cooperation between pension and health insureres. So far there has been no standstill in the developemt of this cooperation, and there is none to be expected. Cooperation will continue and be further developed in order to maintain the resulting qualityguarnatee for withdrawal and denial therapies, and also where possible, to further improve the sucess of therapy.

PREVENTIVE EDUCATION

NEGLECTING THE OBVIOUS

T.G.GARNER
The Hong Kong Society for Rehabilitation, Hong Kong

First of all I wish to express my appreciation (and I am sure you will all join me in doing so) to Dr.Ueda and the members of the Organizing Committee of the Japanese Society for Rehabilitation for including a session on Drug and Alcohol Abuse in the Congress. I would also like to express my personal thanks for this opportunity to add a few additional comments to my opening remarks.
I should mention that I have been involved with the difficulties and problems of drug abuse particularly in South East Asia for the last 40 years. I witnessed the change which took place in Hong Kong in the switch from opium to heroin in the late 1940's and in the 50's. A situation which came about as a result of changes in the administration of the laws relating to what was at the time, a long standing use of opium by some members of the community, coupled with a complete lack of any form of education, or offer of treatment, for those who were dependent on opium. I would go so far as to say that it was mainly due to ignorance on the part of the authorities concerned, of the difficulties which opium dependents would face, at the time when the changes were implemented, that triggered off the heroin abuse problem in Hong Kong, in such a dramatic fashion.
Over the years many changes have swept the world concerning ways to tackle the problems associated with drug and alcohol abuse. Changes that have mostly occurred in Europe and America but have not been so radical or prominent in Asia and the Pacific.
You will recall that in my opening remarks I referred to some aspects of adult behaviour in front of children, this is a long standing problem which, because of human weakness, will I am sure never be overcome. We should, however, continuously remind ourselves about it, for even though it might be done unwittingly, it is a definite source for the learning of anti-social behaviour by a number of juveniles and young adults, which in some cases, shows up as drug and alcohol abuse.
Teachers all over the world are aware of this, the words that come from the mouths of babes (youngsters in primary school) when they talk about happenings in the home, highlights this situation and what would appear to be an apparent lack of concern on the part of some parents. A long standing problem in this regard occurs in Hong Kong where many adults freely use foul language. Quite apart from its use in the home, it can be heard daily in casual conversation by adults travelling on pyblic transport and within earshot of children.
Given the will we can and should do something to try and reduce the incidence of adults setting bad examples and not just ignore them. I believe in many cases it is due to a lack of thought rather than a lack of concern. One of the most suitable avenues presently openh to us in order to do this is the parent/teacher organisation.
Preventive education campaigns have been mounted in many countries to deal with the problems associated with drug abuse and in a more conservative way alcoholism. Usually in nationwide campaigns they concentrate on the problems associated with heroin, cocaine, or cannabis without giving the required degree of attention to other dangerous drugs which are abused, this also applies to alcohol and tobacco. Unfortunately, in most contries too little attention is given to the structure of the family unit. In its place we often hear reference to parent/teacher groups or associations and while these are important and I have already referred to them, in this context they should not be expected to replace the parental role which, in my opinion, must be paramount.
In some cases, of course, parents are trying to off-load their responsibility onto the teacher whose primary role is to educate but most certainly not to fill either the father or mother role in the classroom.
I am a long standing advocate of drugs education being included in the school curriculum, this can be done quite easily under such subject headings as health, public health and social education. In my view, too little is being done in this area. A child while attending primary school should be taught at home and at school the basic principles which underline the taking of medicines. Such factors as controlled dosage, why it must be taken at specific times and for a set length of time as prescribed by the doctor, provides a sound basis for the introduction to such a programme.
Armed with this knowledge, a yougster probably at around 12 years of age moves from primary to secondary school. Here a gradual approach to more advanced teaching on the problems associated with drug abuse, the use of alcohol, including table wines and tobacco, can be given. This will take care of the ignorance factor which for a boy or girl in their early teens is essential. Despite what has been done in this area so far, in many countries today children still learn about such things from their peers in the school playground or neighbourhood which, almost always, is factually incorrect, thus setting the scene which can lead to drug and alcohol abuse.
The problem of alcoholism appears to be greater in some countries that have, over the years, legislated to strictly control the hours during which alcohol can be served publicly, in bars, public houses and the like. In Hong Kong where such stringent licensing hours do not exist, the problems associated with alcoholism have not appeared in the same way as elsewhere. This despite the fact that according to statistics Hong Kong consumes more brandy per head of population than in any other country in the world.
It is also a fact that in countries which previously had short and strictly controlled licensing hours for bars and public houses, they have not witnessed a growth in the problem of alcoholism as the hours were extended. This has been reported quite recently in England and Wales where the normal close down of bars and public houses every afternoon has been relaxed. The Scots are of course more rational and they altered their licensing laws some time ago.
It is good to note that some of the problems which previously existed in countries with stringent opening and closing hours for the serving of alcohol are now being dealt with. One such problem involved some teenagers who, as soon as they reached the lawful age, wasted no time in visiting such places where as yougsters they had been left standing outside the door while their parents went in for a quick drink.
In most European countries and America the importance of the family structure and the family unit has in many cases been neglected. I believe that this has society. This has given way in to an increase in rebellious youth, run-aways and in many cases a do as I like attitude. One case in point is the problem of present day hooliganism among spectators at sporting events such as soccer and more recently hose racing, which in a number of cases, has had fatal results. The abuse of alcohol looms large in such incidents.
In Asia and the Pacific, despite the many problems which prevail in this part of the world, family unity, the family structure and the extended family system is still very much in evidence although I admit in some places it is weakening.
Such family unity which should form the basis of every society, still provides an excellent buffer to prevent the spread of drug abuse and alcoholism. In cases where it has failed to do this, it can still play a role in the field of treatment and rehabilitation and so help to redeem many who have succumbed.
The matter of treatment I know from experience is difficult. In some cases this has been made all the more so through a lack of knowlecge, understanding and recognition of the facts. The use or should I say the improper use of methadone maintenance without built-in safeguards and what I consider to be the essential factor of follow-up has contributed to this. In some places there exists a situation where a narcotic drug dependent, when the drug is in short supply or difficult to obtain, can turn to methadone which he uses as a crutch until heroin supplies have resumed. On the other hand, you also have a situation where a narcotic dependent is allowed to mix the two taking them at different times, sometimes on the same day, without any form of intervention on the part of the authorities.
I believe that the use of the word 'treatment' in conjunction with the word 'methadone maintenance' has created a situation whereby the public have been misled and a methadone maintenance programme implemented without proper safeguards deters many narcotic dependents from seeking a form of treatment which would take him or her off drugs. In oter words, methadone maintenance provides an easy way out. Methadone maintenance programmes have a place in the range of tools to be used in helping some narcotic dependents but we must recognise it, for what it is, and not try to dress it up to be something which it is not.
Another area where we have witnessed a wrong approach to the treatment of the drug dependent and the alcoholic is in their being sentenced to imprisonment. The Judge having done so with the best of intentions so that the offender will receive treatment in the prison. Granted they will have been sentenced for a criminal offence, but Judges by now should be aware that a prison is not a suitable place to treat a drug dependent or an alcoholic. Programmes in prisons are greared to the correction of criminal behaviour. In most cases such behaviour on the part of drug dependents is a direct result of their dependence on drugs over which they have little or no control.
Drug dependents and alcoholics are people and like people they differ from each other in many ways, except of course in their desire to maintain their dependence. With this in mind, it follows that there cannot be for each and every one of them the same fixed periol of time for treatment. They will respond over varying periods of time mainly depending on their attitude, motivation, mental and physical state. Clearly, a special programme is needed for drug and alcohol dependents and this cannot be carried out in a prison setting. I feel very strongly about this, particularly when the offence for which they have been found guilty stems from their problem of dependence. I am also aware of the fact that many prisons in the world today do not provide a drug free environment. This is a very serious problem and a much higher priority should be given to improving the situation in all countries affected by it. The setting aside of a drug free area in a prison, which has been adopted in at least one country, is an admission of defeat.
I have tried in the short time at my disposal to comment on some areas, where I believe, we are neglecting to take appropriate action to correct obvious failings, particularly in our approach to preventive education. If we are to succeed in overcoming the threat that drug and alcohol dependence poses to the world community today, I consider it necessary to reconsider our strategy in the planning of preventive education programmes. The more teenagers and young adults that we can encourage to say NO as a result of teaching them the facts, the smaller will be the market that dealers and traffickers will have to peddle in. But they must be told the truth, as it is, and not as we would like to put it to them out of trepidation. In other words, we must be careful to ensure that they fully realise that what they are being taught is the truth and factually correct. They must also have sufficient instruction for them to be able to refute, any allegations made by their peers in conversation which are not factually correct. Put another way, I would like to see them say a strong NO, born of knowledge, rather than relying on them to say a weak NO, because they were told to say it, for this still leaves them vulnerable because they will have no answers.

Title:
16th World Congress of Rehabilitation International No.12 P.499-P.542

Publisher:
The Organizing Committee of 16th World Congress of Rehabilitation International

Month,Year of Publication:
Jun,1989

To access/retrieve this document:
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