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Emerging Roles for Disabled Persons

Masao Nagai*

Abstract Being tetraplegic, the writer has come across very personal experience in terms of understanding disability and rehabitation, and the thinking of other people surrounding disabled people. As the world is changing, old concepts and attitude have to be changed, so as the roles for disabled persons. This paper is attempted to analyse such phenomenon and seek the efforts of all people to take up new roles.

As I am tetraplegic myself and working in the field of rehabilitation psychology, I should like to start with my own experience to discuss about the emerging roles for the disabled person from the standpoint of psycho-social rehabilitation.

Whilst I was working as a psychiatrist in the United States back in 1958, I was involved in a traffic accident, resulting in a cervical cord injury, thus, paralysis from the neck down. Having been laminectomised, I had rehabilitation training in my hospital. After the complications were controlled and the pulmonary function restored, I flew back to Japan by a military plane. It was difficult for the tetraplegic to reenter the society because this type of injury was considered to be the most severe case at that time. Almost all the tetraplegics were unable to stay away from the sanatoria.

Since I had no intention being apart from society, I came out of the hospital and designed a special wheelchair, made a tilt-table remodelled my house and tried to remain a member of society. At first, I delved into abstracting Japanese medical articles on rehabilitation and sent them to Excerpta Medica Fountain, Amsterdam with the use of a mouth stick and an electric typewriter. Next, together with overseas guests, I was engaged in the education of the first OT's and PT's in Japan. My physical conditions have remained practically unchanged till now, and I am attended around the clock. If I had been concerned only with making physical progress, I might not have been working even now.

In 1964, the Paralympic Games were held in Tokyo, and the wheelchair-fast became a common place sight on the street. This was a great change, as the wheelchairers until that time were patients in Japan whereas the wheelchaired competitors from abroad were already in the society. The endeavour of the wheelchair-user to reenter society is very important, but understanding on the part of society is not any less important. Therefore, the Paralympics played an epoch-making role. Between the disabled and society, the family, medical staff, and the attendants around the disabled must also be in cooperation. The balanced roles amongst the society, disabled and the directly surrounding people are of imperative necessity.

I continue to work in the fields of education, research, and medicine, and now, I make overseas trips every year. During this time, rehabilitation medicine has made great progress and become prevalent worldwide. This is indeed a blessing but at the same time, I have a feeling that the meaning of rehabilitation has become narrower and narrower. Namely, when we talk of rehabilitation, more frequently than not , we refer to rehabilitation medicine, a term that bears the meaning of functional training, and in extreme case, it is interpreted as independent walking or activities of daily living. Now disabilities are becoming more severe, more varied and that the rapid growth of the elderly population is evident. If too much stress is laid on the importance of physical independence, those severely disabled and the elderly may be treated as "drop-outs". Where is the psychosocial significance that was an important part of the philosophy of rehabilitation when it was first introduced?

While we are building institutions, installing equipment and educating paramedical staff, the self-help spirit and mutual-help state of mind become secondary roles. Even now the understanding on the part of society is far from satisfactory, inasmuch as those with the attendants' care are not treated as persons to the fullest extent. Judging from my own experience, rehabilitation is only in the physical stage, and not to the stage of mobility, communication, much less reentry to society or employment. At least, not in the mainstream as a whole person. No matter how severe that disability is, the disabled person should accept the disability and prove his or her potential to live as a human. This is the role of every disabled person. In other words, the disabled persons are urged to make other people accept them, thus make the whole society accept the disabled people around them.

We have so far come across many discussions about roles of disabled persons, but the roles have too often been as subjects for a survey, or to receive treatment, to be given help, etc. All are passive roles. I think, from the standpoint of psychosocial rehabilitation, the emerging roles now should be much more active, positive or action-oriented.

In order to pursue a true rehabilitation, I would like to discuss the way rehabilitation should be.

Rehabilitation is to regain the rights of a person to the fullest extent. These rights include pride, privacy, freedom of choice, ability and words, it is to live a full life. No one is free from obstacles in his life. Therefore, rehabilitation is a matter for everybody. Conversely, everybody has some sort of handicap. In my opinion, handicap is twofold. One is a gap with the ideal inside of a person's mind and the other is a gap or disharmony with the outside of a person. The former is a case in which a person thinks that he is handicapped when others do not think he is, and latter is a case in which he does not think he is handicapped when others treat him as handicapped. The former is a psychological and the latter a sociological disadvantage due to race, age, religion, health, poverty etc. For instance, foreigners who cannot speak Malayan here are handicapped language wise. Rehabilitation is to minimise these gaps with psychosocial adaptation.

As all of us know, when there is an impairment, the above-stated psychosocial problems can occur. If the physical matter is an acute illness, the patient may unconditionally surrender to the surrounding medical professionals for a limited period of time to be cured completely, thus nullifying the concurrent psychosocial problems. Mild or moderate injuries can also be ameliorated by physical training and therefore the accompanying disabilities and handicaps become negligible.

However, as physical conditions are getting much more varied and severe nowadays, the room for physical restoration has become considerably limited. Today's rehabilitation is rather an adaptation by the psychosocial, first on the part of the handicapped and the remaining gap from the social approach.

Nevertheless, now we are even surrounded by numerous people striving in vain to be discharged from the hospital after regaining the capacity for activities of daily living or independent ambulation. Their families do not accept these severely disabled and want to wait for them to become physically independent. It sometimes appears to me that the hospital is also laying stress on training in the order of legs, hands, mouth and head. Rehabilitation should rather emphasise motivation and mental grasping, then communication, daily life, vocation, and transportation, the other way round.

Of course, I do not deny the importance of physical training because it has a good effect on the mind, but when the physical capacity reaches a plateau, we should deal with the rest by psychosocial means as early as possible. Rehabilitation is no longer something that must wait until the physical condition improves, but should start at once with the remaining physical handicap. The people surrounding the disabled must also be prepared to deal with this condition in some cases with an attendant's care.

What I am discontented with is that when people think of rehabilitation, the meaning is almost always passive. Rehabilitation has hereto fore been interpreted only as coming out of an undesirable condition and returning to the previous life. However, it actually must not be to live again but to live anew. It is not for the disabled person to try to measure up to the standard of a normal person's life in vain. Rehabilitation is for everybody who would utilise most of his ability, thus stimulating the ability of others.

When people refer to the disabled person, he is considered to be far behind the standard for normal people. I think this is again mistaken. What is the standard way of living? Where is proof that the standard life is the one and only way of living? Each life and each culture have their own significance. The standards of conformity should not be forced on the disabled person. We have already witnessed that some rehabilitation technology from advanced countries is not universally applicable, and thus disdained in other countries.

In the case that I mentioned before of the acute condition that can be cured, the patients may tolerate following another person's directions completely, because it is a matter of a limited time. But, for the disabled person, there is no reason for him to give up his own standards for a lifetime just because he has an impairment. In other words, rehabilitation is neither returning to the previous life, nor catching up to follow other persons' patterns of life. Rehabilitation is not merely to revive but to renovate. It is to lead a life with new standards. Needless to say, this does not mean an egocentric and immature way of life or a life only among the disabled people apart from society, but rather to have a balance with the standards of the society.

What I wish to point out is that whether there is a disability or not, anybody can have a loss of environment, and that the disabled person happens to have a loss of environment only for a physical reason. Not everybody wants to get back to his previous life, each time he faces the loss of environment. There are countless things that cannot be accomplished when there is a loss of environment. In the case of the disabled person also, he should analyse his condition as a whole.

What is mistaken is that when people talk about a disability it is always referred to as something undesirable, bad, or negative. There is not a single thing that is altogether bad. Generally speaking, if there is a negative point, there is also a positive one by changing the standard or looking at it from a different angle. We should note that even being independent is not altogether good. There should be a balance between independence and dependence.

What is also highly regrettable is that the interpretation of the better life has not been sufficiently positive. It is talking about a better quality of life for the disabled person nowadays. It is merely better than the present life. In my opinion, however, it is an even better life than the one led before the disability. Because, adversity can sometimes turn out to be nutrition for maturation. Namely, the disability is neither an obstacle nor a barrier, but a precious lesson. Therefore, rehabilitation by which we can overcome the handicap can be called a process of maturation. Success in this aspect is contingent upon the premorbid character, the latent potentiality or the background of a person. The emerging role for the disabled person is to demonstrate these things to the non-disabled and help to bring about their rehabilitation too.

It is widely understood that it is necessary for the disabled person to accept his disability psychologically and adapt himself socially in order to succeed in rehabilitation. The interpretation of the acceptance and adaptation, has again not sufficiently been positive. The word accept connotes unwilling tolerance or even giving up. The word adapt can mean being forced by the disability, the surrounding people or society to fit in.

However, true acceptance is not to admit defeat, but to have courage and wisdom to face reality. This is an ability to evaluate what is negative and what is not, and to work out how to turn the negative into the positive. It is not preparing for the minus, but is expecting the plus.

Accurately grasping the reality, without dwelling on the dream, is advantageous in calculating the risks involved in the process of rehabilitation. This will lead to better motivation from the psychosocial viewpoint. Without this positive acceptance and motivation, it is, if not impossible, extremely difficult to aim for true rehabilitation.

Although this positive attitude may depend on personality and background, the person who once became disabled has a responsibility to live positively. This is at once the emerging role and duty for the disabled person. Rather than following after the non-disabled, he should be an example for them. Whether there is a disability or not, a person has his own goal and it is important to strive for his goal with his maximum ability. Rehabilitation is to transfer this endeavour with each other, and is not a one-way street.

People should not be indiscriminately divided into teachers and learners, directors and receivers, and leaders and followers. The disabled person has always and totally been on the side of being forced or helped. The physically disabled person only happens to be in the situation of being medically helped and is not totally inferior to others as a human. It is natural that the physically disabled person should be able to teach the healthy people in some areas. The emerging roles here are to take the teaching, leading and helping parts. The non-disabled also should not imagine that the independent state of mind can be transferred. What can be transferred is only the spirit of the non-disabled when they try to rehabilitate themselves. That is to say, rehabilitation is to cultivate the way by one's own will, or to transfer the way by empathy.

In order for the disabled person to accept his disability positively, the disabled person must be accepted by the surrounding people, and for this purpose, the surrounding people must be accepted by society. Therefore, the emerging roles for the disabled person include the effort to persuade the people surrounding him.

The same thing holds true with adaptation. There are stages of adaptation. The first stage is regression, in which people become overly dependent. The second stage is accommodation, in which people come to tolerate their disability. The third stage is called practical compromise where they are competing with the non-disabled. What we are really aiming at is the highest stage called integration of disability where people attain courage and maturity that comes only with the experience and presence of disability.

This positive idea is not only with the disabled person. Then non-disabled person also should conquer the loss of environment to adapt himself to the society, as nobody is fully adapted in every phase of life. It is the duty for each person to contribute to society by his role in it. Society ought to be rehabilitated too. The disabled person can only be said to have a better opportunity to show it how.

As mentioned before, rehabilitation is for everybody, it is a misinterpretation to think that rehabilitation is for the disabled person. Besides, it is inappropriate to classify human beings into two categories based only upon physical criteria. Moreover, it is impossible to draw the line clearly between these two. The discrepancy between international sports competitors and normal people from the standpoint of physical capacity is much more that the discrepancy between "normal" and handicapped people. Likewise, the difference between the physical capacity of mildly disabled people and those severely disabled who must be attended all the time, is much more than the difference between "normal" and disabled people.

Mention should be made that today's "normal" people will become disabled people of tomorrow, from severe diseases, pollution, labour mishaps, traffic accidents, drug abuse, malnutrition, crimes, educational problems, poor mental hygiene, war victims, and stress. At least, it is certain that we will become the aged with the recent tendency of rapid growth of the elderly population. Even if we do not have a disability, it is quite possible to become "Third Party Handicapped", if one of our family members or peers becomes involved in a disability. We must at least think that all of us were both physically and mentally handicapped to a severe degree without fail, when we were born.

When we discuss the roles for the disabled person, he is not only the one with the handicap. Conversely, the disabled person is not any differece from others, but is only given more opportunities to live more positively than others.

I would like to conclude, by saying that the human mind is not to be defeated for good by disability, and that the disabled person should demonstrate how to lead an even better quality of life than before the onset of the disability, thus showing the non-disabled how to overcome their own loss of environment. Of course, the new and more mature way of life cannot be accomplished only by the effort of a single person. The understanding and cooperation of others are indispensable. Therefore, the disabled person must work on the people directly surrounding him. The disabled person should be this time on the teaching and helping end which is much easier. The disabled person should look forward to a day, when he or she can say "I would not have come this far, if I had not had a disability."

* The following paragraph is contributed by Professor Ichiro Maruyama, the President of the Regional NGO Network, in memorizing the achievements made by Dr. Masao Nagai:

Dr. Masao Nagai, MD, a psychiatrist in Japan, passed away in February 1999 at the age of 68. Born in Tokyo, Japan in 1931 and graduated from School of Medicine, KEIO Japan National Rehabilitation Centre, Dr. Nagai, lectured regularly at Tokai University and at many other schools of medicine. Dr. Nagai had a traffic accident in the USA while he was a resident doctor in Michigan University Hospital in 1958, and became a tetraplegic and got himself into rehabilitation programs in USA and Japan right away. Since then he needed round the clock attendant care, continuous medical treatments of various kind and regular hospitalization. He had to live in very exceptional severe conditions. While sitting on a wheelchair, he needed to be tilted backwards almost every 10 minutes because of very low blood pressure. He always took sweets to supplement his blood sugar and had to be careful not to cause diabetes. Even while sleeping, he needed to be turned over every hour to prevent bedsore and from falling into deep sleep. He always said he was living on very critical balance of everything around himself. However Dr. Nagai had never stopped his medical practice. He and provided rehabilitation support to many individuals with and without disabilities all over the world. As a mentor of many professionals, he was always full of humor and jokes to cheer people. In spite of the severe challenges, Dr. Nagai survived for 41 years, which was really a miracle and a glorious example of human kind.

After Dr. Nagai gave his speech (the above article) at the RI Regional Conference in 1983, he said to me that the ideas presented might be too advanced for the Region.

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Asia & Pacific Journal on Disability, Vol. 4, No. 2, December 2001, pp 28-34 M. Nagai