The conference theme of "Equality through Participation" is an apt way of expressing the goal of total rehabilitation. We are not equal in regard to our disabilities, but all should have equal right of access to the means of income. Not equal in the sense that all have the same talents or the same goal or should live identical lives, but equal in access to resources and opportunities. The proper place and proper role in society of a person with disability should be determined not by the disability, but by the person's abilities, interests, and aspirations.
Einstein's famous formula for energy and mass can be paraphrased for rehabilitation.
E = mc2 in which
E stands for Equality of opportunity for self-development and participation. m stands for personal Motivation and adjustment, self-action and self-control. c2 stands for (Compensation for limitations through aids and assistance) x (Communication: open arms and opportunities, cooperation and acceptance from others).
Rehabilitation is a partnership between the person with disability who must put out his/her own energy and determination and society which must offer the services needed for overcoming limitations and promoting integration. Such rehabilitation does not happen automatically. It has to be consciously initiated. In most undeveloped countries rehabilitation starts from grassroots. Families or friends of some particular persons with a disability like blindness or polio, or maybe an involved doctor or social worker, start some small program on their own to provide services. Others join in and a foundation is born or a private agency. If successful, it is copied in other places until finally the government steps in to extend such services on a national scale.
Thus in Taiwan Mrs. Amy Yang, the Chief Social Worker of the National Taiwan University Hospital in Taipei began a workshop to provide training and employment for discharged patients. It is now affiliated with Goodwill Industries in the United States. Two Maryknoll sisters in the course of visiting homes discovered disabled persons who for lack of wheelchairs or braces, education or training, were idling their days confined to the inside of their homes. So they began the Bok-Ai (Benevolence) Foundation to provide training and jobs. Several years later Mrs. Chou one of their supporters recognizing a local need for basic training and vocational services for the mentally retarded began classes and a pottery workshop for them. Today the government is subsidizing the construction of a seven story building to expand her work.
Several Christian hospitals to meet the needs of their discharged patients established centers for the education and rehabilitation of young persons crippled with polio. Miss Hsia Liu very crippled with arthritis and the famous author of several very popular books of essays, with the support of her family and the members of her church, established the Eden Foundation to provide training, counseling and other services for those with physical disabilities. A missionary Fr. Brendan O'Connell, MM seeing the plight of several families in his congregation who had children with mental retardation established the St. Raphael Opportunity Center, which has become a model for many others. Families and friends of persons with severe facial disfigurement due to burn injuries founded the Yang Kuang Foundation to provide counseling and work opportunities for such persons.
The list goes on and on. These people were the Pioneers. Others seeing their efforts began similar enterprises. The government recognizing the value of these contributions then began to sponsor similar works in other areas. None of these projects started big. They became big only because they served a real need and their value once recognized brought public assistance and support.
Besides these Pioneers who became the original service providers, there are others we might call the Prophets, the Pathfinders, the Bridgebuilders, or the Animators. As Prophets they stir up public awareness of the rights and needs of persons with disabilities. Nowadays we would call them Advocates. But some of them are more than that. They step in themselves to help the disabled regain faith in themselves and to find a way to reach their goals.
This presentation is the story of two such Prophetic, Pathfinding Animators, Mr. Ignatius Huang and Mr. David Chi. who are serving persons with physical disabilities in a center called Operation De-Handicap. In a small way it is my story too, since I was the one who recruited them and found the initial funding.
When I got polio in Taiwan in 1958 there were no rehabilitation facilities. Thirteen years later when I first began work as a vocational rehabilitation consultant in Taipei, there were already several good rehabilitation medicine facilities offering therapy services.
However, I soon discovered that many rehabilitation patients particularly the young and those without any previous work experience often went home to vegetate for lack of follow up. They did not know where to go, nor what to do. They were in need of counseling and guidance, information and referral. I began to form the idea of starting such a service myself by finding and sponsoring someone motivated and qualified enough to do the work.
Then one day an old friend of mine Ignatius Huang, who was about to graduate from a technical college, dropped by to say hello. For several years he had been moderator, counselor, and role model for boarders in a middle school youth center for boys where I had also been serving. Though he ruled them with an iron hand they treasured his advice and respected him as Big Brother. Dedicated to the ideals of service for others, he had come to tell me that though his college major had been in the field of printing and publishing, he had decided to accept an invitation to join the staff of a Lifeline telephone emergency and counseling service in his home town.
Though he had no background or experience with disability or rehabilitation, I felt his character and talent of dealing with people were just what I was looking for. So I asked him to consider coming to work for me instead. He finally decided to give it a try if his fiancee would agree to the change in their plans. She did and our partnership was born. Mr. Huang would be the contact person, counselor and guide for our "clients" and help them to find training and jobs and sometimes, it also turned out, help them find suitable husbands or wives.
In principle, we decided that the counseling services would be free. Seminars, excursions, or other activities would be charged at cost, but those who could not afford the charges would be subsidized, if possible. From the very beginning it was our intention not only to be a resource of information for persons with disability, but also for all those in the community who wished to assist in their rehabilitation, including rehabilitation service personnel.
Eventually we would found a magazine also distributed free. We would not, however, try to provide any medical services, training facilities or sheltered workshop, not wishing to duplicate what others more qualified than ourselves were already starting to do. We would be the liaison between the persons with disability looking for direction and the resources that would provide the means to achieve their goals.
One important decision made was that Mr. Huang and his family would live at our center. Not only would this be a supplement for his salary, it would ensure that our services would be available not just during working hours. Crises or problems do not happen only during office hours. Nor can persons at training or work get time off to drop by during the day. Living at the center also meant that Mrs. Huang would often be available when Mr. Huang was absent. She turned out to be of marvelous assistance, especially helpful with female clients who wanted to talk about feminine matters. The Huang's two children thus grew up surrounded by persons with disability. When they were small being disabled seemed to them as normal as being non-disabled.
It was decided that I would not leave my job of consultant at the Veterans General Hospital, but would be responsible for finding the money to keep the project going and provide the technical information. In the very beginning, Mr. Huang's salary came out of my own salary, but gradually we found other assistance. Over the years there has been a substantial shift in the source of the donations. At first 90% came from foundations and friends abroad. Today 75% of our needs are funded from local donations and the proportion keeps increasing.
Our first task was to chose a name for the center. Actually we chose two, one in English and one in Chinese. The English name "Operation De-Handicap" epitomizes what we were trying to achieve. When a person has a mental or physical impairment, it usually results in a permanent disability. Thus my polio left me with a high degree of paralysis in all four limbs and trunk. My permanent disabilities among others are the loss of the functional abilities to walk or lift my arms. This is an inconvenience I must live with the rest of my life, since rehabilitation cannot restore my lost motor nerves.
But rehabilitation can remove or compensate for the handicaps caused by my lack of functional mobility. An appropriate wheelchair makes it possible to get around, ramps and wide doors allow me in to enter into the mainstream of community activities, counseling and encouragement dispelled my discouragement, acceptance and appreciation from others reinforced my sense of self-worth, graduate training in the University gave me the rehabilitation expertise.
Most of the handicaps we face are caused by the environment, lack of resources, proper equipment or assistance, social barriers of misunderstanding, fear, or rejection. Such handicaps are removable or can be compensated for, hence our name "de-handicap".
In Chinese, however, our project was given another name that expresses our goal from another angle. There is a Chinese saying "Dz li Geng Sheng" which means "to better one's own life through one's own efforts", to pull one-self up by one's own bootstraps as it were. We took the last two words of this saying and called ourselves in Chinese the "Better Life Rehabilitation Service Center", a center for helping persons to help themselves. The ultimate responsibility for rehabilitation's lies on the shoulders of the disabled them-selves. Without their own determination, personal efforts, and persistence rehabilitation fails. But rehabilitation also fails without direction, information, resources, and opportunities. Our purpose was to help provide that assistance.
Our original clients were mainly young persons who had gotten polio when they were small children. Recently, however, with the dramatic drop in polio, we see more spinal cases, head injuries and cerebral palsy. One day the parents of some children with Duchenne muscular dystrophy came to the center for information and support. Today the center has a registry of over 220 families with such children. Training and seminars for them have been organized all over the island. Schools have been contacted to provide accessibility, contacts made to procure respiratory equipment at reasonable prices, a com- puter database set up with relevant information.
The first few years Mr. Huang did all the work himself, relying on volunteers, usually disabled themselves for assistance organizing and facilitating group activities. Finally when the work became too much for one man to handle alone, we hired Mr. David Chi. Though severely disabled from the waist down by polio, he managed to finish high school and then completed college in the night division majoring in Chinese with a strong minor in English. He was working at a bank when we recruited him. The qualities that attracted us to him were the way he interacted so well with others and seemed so adjusted himself and understanding of the problems others were experiencing
This team of Huang and Chi has been very busy over the past fifteen years (Mr. Huang 23 years).
* They have answered over 50,000 letters requesting information or advice. * They have handled over 100,000 telephone calls. * They interviewed, advised, or discussed rehabilitation issues and options over 50,000 times with persons who dropped by the office for consulta tion. * In the first 15 years they counseled over 1,500 persons who were seeking employment. Since the passage of a revised rehabilitation legislation in 1990, vocational assistance for persons were disabilities has been more and more available from governmental and private agencies. * They have an active file of over 2,600 persons who receive our magazine or want to stay in contact. * The quarterly magazine they edit is already in its 79th issue. * Their Muscular Dystrophy Newsletter is in its 80th month. * They published over 4,000 copies of an 80-page Polio Manual to help those with polio to prepare for and adjust to the possible effects of the post-polio syndrome. (Since then with our permission the Manual has been copied and distributed by several public and private organizations in Southeast Taiwan and several Chinese speaking areas in Southeast Asia.) * They published a 112-page Manual on Muscular Dystrophy as a guide for families who have children with progressive Duchenne Muscular Dystrophy. * They organized over 100 special meetings and seminars in Taipei and other areas of Taiwan to discuss such issues as "How to live with Polio", "How to Make the Environment Barrier-free", "Marital Problems", "The Post-polio Syndrome", "Duchenne Muscular Dystrophy." * As invited "experts" they have been asked to participate in over 400 committee meetings, government hearings, public discussions on nearly every aspect of rehabilitation and social concern for persons with disabili- ties. * They frequently contribute articles and opinions for publication in local newspapers about current rehabilitation issues and legislation. * They developed about 10 traveling poster exhibitions to acquaint the public with rehabilitation concepts and barrier removal. * Once or twice a year they collaborate in the projects of other groups serv-ing persons with disability. * They have organized about a dozen seminars to show the public how to understand and relate to persons with disabilities. * They have organized for local churches their "Disabled Sunday" activi- ties. * They have arranged and led nearly 50 trips and excursions around Taiwan for over 1,900 persons with disabilities and their families. * At the special request of families of children with duchenne muscular dystrophy to organize overseas trips for their children so that they can experience a bit of the world before their conditions deteriorate and they can no longer go anywhere, Mr. Huang has organized and led 19 expeditions for over 400 persons with disabilities and their families to Thailand, Singapore, Hong Kong, China, Japan, Korea, and the United States.
It staggers my imagination how these two individuals with only occasional volunteer assistance ever managed to do so much. The ingredients of their success have been: 1. their dedication; 2. their interpersonal skills; 3. their rehabilitation information resources; 4. their network of contacts and cooperation established with rehabilitation service providers; 5. the confidence they have built up for openness, honesty, and expertise; 6. an ongoing though somewhat erratic source of more or less regular finan- cial aid so the bills manage to get paid.
Don't get me wrong. Operation De-Handicap is not an important agency or widely known. It is only one of many rehabilitation organizations in Taiwan and a very minor one at that. If ODH had not existed at all rehabilitation in Taiwan would still have expanded, legislation would have been passed, thousands would still be receiving services. But without the voice of Operation De-Handicap and other outspoken interveners like it, the progress of rehabilitation might have been slower and its outreach narrower. And those who passed through Operation De-Handicap's door may not so readily have found solutions for their problems.
I am making this presentation today not to seek praise for whatever accom- plishments Mr. Huang and Mr. Chi have made, but to offer what they are doing as an inspiration to others in counties or areas where rehabilitation services have not sufficiently reached. Community based rehabilitation is needed. For that to take hold there must be a community based voice, a nucleus of rehabilitation minded individuals to give the disabled hope and guidance, and push the community to take action.
To those in developing regions, I only want to say this: if you are experiencing some lack of rehabilitation services or information, don't wait for the government or some big agency to get around to doing something about it. Operation De-Handicap started very small from one person who knew something about rehabilitation and another who was willing to offer some positive action to help. It grew from there because it fulfilled a real need.
So don't count your blessings. Share them. Don't resignedly do without the blessings you don't have yet or patiently wait until someone else gets them for you. Do something about it yourself. Find someone with the same purpose and put your heads and hands together. Become for those around you their Rehabilitation Prophet, Pathfinder, Bridgebuilder, or Animator. You will quickly find you are not alone.
18th World Congress Rehabilitation International
Auckland, New Zealand 1996