5 November 1997 (Wed)

1. An Adjustment on Japanese Independent Living Concept of the Persons with Disability.
2. Attempt to Make Clear the Social Barriers of an Independent Living Condition in a Community.
3. A Detailed Explanation of the Social Services for an Independent Living of the Persons with a Serious Disability in Japan.
4. Grope for the Possibility on an Independent Living of the Persons with a Serious Disability in a Community.

1. An Adjustment on Japanese Independent Living Concept of the Persons With Disability.

The independent living of the disabled can be classified into the following five categories:
(1) Physical Independence
To be able to do every day routine work for oneself. And to be able to ask for help when one needs it.
(2) Spiritual Independence
To be able to be self-determining and self-selecting and to be able to take responsibility for the results.
(3) Living Environment Independence
To rent and to buy by oneself in an apartment, etc. And to reform the housing conditions to be useful.
(4) Economic Independence
To take a job and earn one's one living. If this is not possible, to be able to administer one's own pension and SSI (Supplemental Security Income).
(5) Social Independence
To be able to relate meaningfully to other people and to be respected by society.

It may be difficult to accomplish these, but taking these five categorizes into account they are ideas to use in educational programs for independent living.

The types of living of the disabled can be classified into the following nine types by nursing system:

1. Self-support type: A type of living by oneself without any nursing care.
2. Spouse-support type: A type where one spouse takes care of the other. Either one of both having disability.
3. Group-home type: A type where several disabled people are living together and helping each other.
4. Volunteer type : A type where twenty-four or part-time attendant care is provided by volunteers.
5. Home-helper type: A type where the disabled do almost all things for themselves and where home-helpers help them once or twice a week only with what they cannot do for themselves.
6. Attendant type : A type where the disabled hire attendants for twenty-four hour or part-time care, like attendant care system in US.
7. Family-support type [1]: Living in the neighborhood: A type where the family lives near the disabled provides necessary help for him.
8. Family-support type [2] : Living with disabled: A type where the disabled lives with parents, brothers, or sisters who help him.
9. Institution type: A type where the disabled lives in an institution with help from its staff.

It is desirable to decide which of these nine types each disabled person should employ as his goal after careful evaluation of the disabled persons including his disability, health, ability to organize himself, sociability, financial resources, family situation, degree of spiritual independence, etc.

2. Attempt to Make Clear the Social Barriers of an Independent Living Condition in a Community.

This is asked in order to learn what is the biggest block to becoming independent for the severely physically disabled.
Their opinions can be divided into five as follows:

1. One's own handicap and what each thinks about
2. One's own family
3. Material barriers
4. Prejudice and discrimination and
5. Administration and its policy.

In relation to the opinion, "one's own disability" an what each thinks about it", many think they could be independent if they had no disability. Also, some think their insight about their handicap is not deep enough. Second, their opinions about "one's own family", center in problems with parents, brothers, and sisters who do not really understand them or who are overprotective. One of the residents in an institution expressed his anger by saying, "When I reached twenty years old, I tried to leave my home and live in an apartment with a volunteer. But my parents resisted by threatening me saying that if I did, I should leave my name out of the family register. Because of this threat, I had to abandon my plan. Later they put me in an institution after all". There are some similar cases and some do not hesitate to say, "Parents are enemies".

I can understand the parental feeling that even after their child has grown up, they still want to treat them like a baby because they do not really trust the child's judgement. In Japan, individualism is not as developed in the US where once grown up, each individual becomes responsible for his own life. In Japanese tradition, everybody cannot be self-sufficient. I think it is necessary, when we discuss independent living for the disabled in Japan, to take the Japanese family system into consideration. Although he is a disabled person, he should recognize his duty as a human being. That is, he should play his proper role in society and do his duty which, of course, includes his duty to his parents. It is wrong to think that he can escape his responsibility to support his parents because he is disabled. Support is not limited to economic support. However severely disabled he may be, he can support himself spiritually, cant he? Whether he is living with his family or in a residential institution, this is the time when he should think about his independence without thinking that living away from his family is the only form of independent living.

As to "material barriers", many pointed to the problems they have which are similar to those given previously. Thus, there is the question about "going out", particularly problems concerning public transportation including that they cost too much, especially welfare taxis.

In their opinions about "prejudice and discrimination", many people complain that they have no opportunity to be employed. In addition, some say that they cannot go outdoors because they are stared at too much. Indeed they say that prejudice and discrimination is one of the causes of their not being employed, but I do not think this is the only cause. The disabled have a bad habit of attributing what is inconvenient for them to be prejudice and discrimination. Or it could be said that because they lack social skills, they think that every inconvenience includes prejudice and discrimination.

One of the institution residents answered as follows:
"I contributed one of my poems to a newspaper and it appeared in the paper. But this was the first and last time any of my poems were published even though I have continued contributing to newspapers and magazines. This is because I am discriminated against due to my disability. Otherwise, they could have employed me". He was angry and excited when he talked. It is important to note that he believed his unemployment is due to discrimination towards him. This is not a rare case. I often hear of such cases. This shows the importance of social experience.

Concerning the last opinion, "administration and its policy", many people explain about the amount of pension or SSI (Supplemental Security Income) in particular. Also they feel it is necessary to have an allowance for attendant care given to them. They want the amount of pension or SSI increased and they want the attendant care fee to be separated from the public assistance system. There are some complaints about the shortage of public attendants such as home-helpers.

Many persons with disability did not answer this question or answered: "I have no idea" This made me feel that they have never thought seriously about their problems. Their indifference seems to me to create major difficulties because the beginning of independent living depends on each person's recognition of personal problems and his willingness to deal with them directly.

3. A Detailed Explanation of the Social Services for an Independent Living Of the Persons with a Serious Disability in Japan

We can receive any of these prosthetic appliances or have the local government to repair it: (a) artificial hand, (b) artificial leg, (c) crutch, (d) wheelchair, (e) power-chair, (f) ambulatory cart, (g) protection cap, (h) urinal, (I) bed pan, (j) chamber pot.

The majority of those surveyed have been given wheelchairs which are necessary for them. Some of the cerebral palsy sufferers said they had not known about artificial hands and legs, but few marked these with a triangle which means that they know well what services they need.

We have been provided with any of the following items for daily living:(a) bath-tub, (b) hot-water heater, (c) portable toilet, (d) special toilet, (e) bed-pad, (f) special bed, (g) electric typewriter, (h) word processor, (i) electric toothbrush, (j) bathing stretcher, (k) fire alarm, (l) automatic fire extinguisher, (m) special chamber pot, etc.

Those who live in institutions are provided with word processor, while those in apartment houses for wheelchair users are provided with fire alarms and automatic fire extinguishers. At the same time, those in institutions or regular houses are less interested in these things and usually do not know about such services. Because it is necessary for the disabled to make use of such administrative services in order to live independently, the manual for using them is necessary and should be utilized for education for independent living.

We can always use a free commuting ticket for subway and bus OR a free ticket for taxis. We cannot use the free ticket for both transportation in Kyoto. And we pay 50% of the actual fare of the railway (without a limited express) and highway.

The persons with disability receive a pension and an allowance. That account of money on a pension and an allowance is too cheap that the persons with disability cannot make a daily living by themselves. We have an attendant system for the disabled. But the hours of attendant care is only 64 hours per month in Kyoto. We need more hours of attendant care to make a safety living.

4.Grope for the Possibility on an Independent Living of the Persons with A Serious Disability in a Community.

The "Independent Living Movement" started in the United States of America in latter half of the 1960s. The American concept of independent living was developed in Berkeley, California in the 1970s. The "Center for Independent Living Inc., (CIL) was established there. It is now the base and center for the disabled who are living independently.

In 1981, the International Year of Disabled Persons, the term "independent living" was introduced to Japan. Since then the independent living movement has been developing in various parts of Japan. At the same time, centers for supporting independent living of the disabled have been founded one after another by the leaders of disabled movement groups. However, in terms of the interests of the disabled persons themselves in Independent Living movements or the support system provided by the citizens, we have to admit that not much enthusiasm is recognized in Japan compared to the movements developing in America. One of the reasons for this is that the Japanese concept of independent living is not agreed upon or understood by all the leader of the disabled groups.

It is impossible to accept and develop in Japan the American concept of independent living which has developed in the American political, social, and economic system. There are differences in national traits between the two countries. Also, even the disabled persons are a sub-group situated within the main system of the Japanese people. In contrast to the American idea of independent living aiming to "live by oneself in the community", the Japanese concept emphasizes strong ties within the family, community, and among relatives. It is an independent living well understood by the disabled themselves and also by the support groups.

It is necessary to think about all types of assistance to the disabled who wish to live independently. The Independent Living Research Institute conducted a survey from 1985 to 1986 concerning independent living of the seriously disabled persons. The results of the survey indicate that for the severely physically disabled to achieve the goal of independent living what is most needed in terms of assistance is education for independent living.

"Independent Living Skills Class" at CIL in Berkeley, focuses on helping the disabled who wish to live independently in the community and to acquire skills for doing daily chores, such as shopping, washing and cleaning the house. They are trained in a house specifically designed for disabled persons who are themselves leading independent lives. Thus the training given at the CIL is for the disabled who are highly motivated for independent living, that is, for those who have relatively high capacity for social skills. At present, educational programs for independent living in demand in Japan are not for a specific group of the disabled as in America but for a large scope of the physically disabled persons.

There are different types of welfare agencies for the disabled in various parts of Japan. They have their own program organized by their worker based on repeated trial and error. They have used the trial and error method because manuals for organizing the program for the disabled persons have not been prepared yet. We need a comprehensive manual segmented into several steps according to the developmental process of independent living.

This thesis is intended to clarify the concept of independent living of the seriously physically disabled by classifying the concept into five categories and their life styles into nine categories. Also this thesis, using the experience from the "Independent Living Educational Class" which I organized discusses eleven steps for the seriously disabled persons to follow to achieve independent living.

From "Resource Book of Training Course for Leaders of Persons with Disabilities 1997"

Japanese Society for Rehabilitation of Disabled Persons