Material
Material 1:
Looking back on the experience of living in an institution (excerpt from a newsletter of an organization of persons with disabilities)
I attended a special school for children with disabilities for four elementary school years. Then, I moved to an institution for children with orthopedic disabilities. It was more than 30 years ago, but there is something I cannot forget even now.
It was a "doctor's rounds day" that happened every Wednesday afternoon. I was always scared on this day. A group of head nurses and therapists led by director of the institution marched into our room. They walked around, measuring our knees and lower back with a protractor-like tool. When declared, "Let's operate on the back of your knee," you were expected to go to the operation room the next week. I felt scared and uneasy, wondering if it would be my turn this week. Because of cerebral palsy, parts of my lower extremities connected by joints such as the lower back, knees, and the heels had not been fully straightened. The reason why I wrote "had not been" is that they came to be straightened after an operation. However, this time I was not able to bend the straightened parts of my body. Especially, the worst for me was that I was not able to bend my knees as a result of an operation on the back of my knees (both legs). In daily life it is far more inconvenient to have knees that cannot bend than to have ones that cannot stretch fully. Those who experienced wearing a plaster cast because of a fracture or something can relate to this, I think.
My mother, who observed that my disability became severer every time I came home from the institution for a visit, got scared and decided to send me to an ordinary school from junior high school. When I was in the institution, every Thursday was operation day. (Although I was a child, I knew the jargon "op day.") As there were two operating tables, two children were meant to be operated on each week. In fact each of us had operations 4 to 5 times on average. And, no matter how many times we underwent operations, we did not receive any explanation about how effective the operation would be and what possible bad effect should be considered. (You may think the explanation was not given to me because I was a kid, but my parents did not seem to have received a sufficient explanation, either.) And, even when the "expected good effect" did not appear but rather the operation made the disability even worse, I do not remember any case when the doctor's responsibility was questioned. Now, since we have no way of knowing how the doctor is thinking now – whether he reflects upon what he did or he avoids any thought of responsibility – we still feel that we are left hanging and unsettled about this issue.
As illustrated by the above-mentioned medical cases, a doctor had tremendous power in that particular institution. He not only had the authority to decide about surgical operations, but also to determine the details of our lives in the institution – for example, even about our posture whenever we slept.
About three months after I entered the institution, an exercise called "Positioning" suddenly started. In my case I was made to lie prone on a board (like a conference room table top) which was placed on the bed. Then, my lower back was bound by a cloth that looked like bleached cotton. I was forced to stay in that fixed position and I had to sleep for about 12 hours from 6:30 p.m. until 6:00 a.m. of the next day. To forcibly straighten my body which was not naturally straight, I was bound by considerable force. I used to get up in the morning to find my lower body in dark color, past the stage of being reddish, because of poor blood circulation. The most painful part of this exercise as a child was toileting. Because the lower back was tied, naturally, the urinary bladder was pressed. When I was no longer able to endure nature's call, I had to call a nurse by a nurse-call apparatus. Bringing a urinal, the nurse ordered me, "Do it quickly." But, due to my disability of cerebral palsy, the harder I tried to urinate quickly, the more difficult it became. Then, I was bound again. And again, the pressure made me feel like urinating. Thus, I had to call a nurse again. After repeating this process, the nurse who could not understand what was happening finally scolded me bitterly, saying, "You are telling a lie because you don't want to undergo this exercise." "It's not a lie," I muttered in my mind, but the words did not come out of my mouth. This medical experience in the institution has become a memory I could never forget all my life, a memory which I would even call a "grudge." It would not be an exaggeration to say that the aforementioned experiences made me leap into the movements of persons with disabilities.
Material 2:
All the support is for the realization of community life – “Support” April 2005 issue
Two sets of ideas on independence about policy changes for persons with disabilities
Policies for persons with disabilities are at a significant turning point.
With regard to the "Law concerning Self-reliance Support for Persons with Disabilities" that had been put on the agenda of the Diet on February 10, some 2,000 persons with disabilities and their supporters gathered around the Ministry of Health, Labour and Welfare and the National Diet building, with the slogan, "Please do not decide on matters concerning us without us," "We will not tolerate a setback from community life."
The point of criticism is that the "Law concerning Self-reliance Support for Persons with Disabilities," contrary to how it sounds, poses certain problems causing setbacks and the prevention of independence of persons with disabilities. Some Diet members began to say, "This is an independence inhibition law." Is it an "independence support law" or an "independence inhibition law?" We can say that in the undercurrents of various opinions on the matter, there emerged two different theories on independence.
Since the 1970's persons with disabilities have developed the independent living movement seeking "independence in the community," meaning "No matter how severe the disability is, we shall live in the community, not in an institution or in a hospital." Later, the International Year of Disabled Persons in 1981 caused the concept of normalization to spread widely – the concept which aims to have persons with disabilities and those without disabilities live equally in the same communities. In the 1990’s the Basic Law for Persons with Disabilities (1993), the Heart Building Law (Building Access Law) (1994), and the Plan for Persons with Disabilities (1995) were enacted, and the Barrier-Free Transportation Law was revised (2000). At the same time, the establishment of independent living centers, the improvement of the attendant care system, and the development of group homes as a means of community life have taken place in various places. In the course of these developments, the Assistance Benefit Supply System began in fiscal 2003, with the intention to "respect the self-decision of persons with disabilities based on the idea of normalization."
While we have such an independence theory with "self-determination" as the core, another theory advocated for a long time is independence in ADL (activities of daily living) and in one's occupation. This theory has it that "to become capable of doing the basics of taking care of oneself, like changing clothes and eating meals" or "to acquire skills to earn a living" (alone) is independence. Various medical treatments and trainings have been conducted to achieve these goals. However, such an independence theory can be taken negatively that a disability is something that should be conquered and be treated, and, after all, the theory has brought about the isolation of persons with severe disabilities, resulting in difficulties to lead a normal life in communities.
It is the independent living movement for persons with disabilities that has criticized such a conventional independence theory. It was also the idea of normalization that regards the issues of disability in relation to society, not as an individual issue.
It is important to know the differences in theories of independence as a background of the "Law concerning Self-reliance Support for Persons with Disabilities."
Community life support created by persons with disabilities and by communities
The reason why I stated above the two independence theories comparatively is that it is closely related to the evaluation of the attainment stage of the present policies for persons with disabilities. Furthermore, when we say, "Amend the health and welfare policies of persons with disabilities," the question is "what and how do we amend?"
Endeavors towards independent living in communities have progressed since the 1970's. In those days, however, it was taken as natural, both from the perspective of the government systems and social awareness, that persons with severe disabilities be taken care of by their families, and in case it became impossible, they be institutionalized (in an institution after the parents pass away). Even in those days, some persons with disabilities got out of the institutions and hospitals, and continued to live in their communities by renting an apartment house and creating an attendant care system with the help of volunteers.
The idea of normalization was widely introduced starting with the International Year of Disabled Persons in 1981. With this, from the latter half of the 1980's to the 1990's, some local governments institutionalized attendant dispatch services for persons with systemic disabilities and guide helper services for people with intellectual disabilities. Also, independent living centers grew as persons with disabilities gave one another support through peer counseling. The number of joint community workshops rapidly increased since the 1980’s. Furthermore, group homes as a means of community life also started to grow in various places.
All these were created based on local communities (local governments) with the persistent endeavors of persons with disabilities and their supporters. Until the revision of the eight laws related to social welfare, the Basic Law for Persons with Disabilities and the Plan for Persons with Disabilities came about in the 1990's, there was not any notable system or mechanism to support community life on the national level. Therefore, we can say that the activities and mechanisms that supported community life for persons with disabilities were created by themselves and by the communities on the local level. Moreover, as a person who was involved in the movement to create a guide helper service for persons with intellectual disabilities in Osaka City for the first time in Japan, I would say that the services created according to the needs of persons with disabilities are the ones that are easy to use and that are highly evaluated.
The "guide-help", incorporated in the Assistance Benefit Supply System as mobile attendance, spread all over the country. Only the negative side of this system tends to be talked about from a financial point of view, but we should not forget that the community life support developed by persons with disabilities and by their communities has been elevated as a system to the national level.
System design and service reorganization based on community life
What is being called for when amending the health and welfare policies for persons with disabilities is the mainstreaming of support/services aimed at independent living in the community developed by persons with disabilities and their communities. Furthermore, all the support regarding persons with disabilities should be reformed to aim at the actualization of community life.
It has been more than 20 years since the idea of normalization was widely introduced in Japan. We are now in the stage of implementing this idea. In such endeavors we may encounter temporary confusion or setbacks. However, it is certain that the trend is the shifting of the paradigm from "protection/rehabilitation" to "independence/right".The trend from "institution" to "community life" is also based on necessity, and this trend can never be reversed.
In addition, from the international perspective, the discussion on the Convention on the Rights of Persons with Disabilities is going on. For instance, the draft has an item "Independent living and inclusion in community." The system and design based on "independent living in community" will be the demand of the times. Let me write down the key points :
- Realization of self-determination by persons with disabilities and the promotion of social participation to be a basic target (to enable persons with disabilites to lead independent lives in the community no matter how severe the disability is)
- Systems and design supporting the individual needs of each person ～ actualization of personal assistant service which is now practiced in other countries
- Systems and policies that proactively adopt activities, ideas, and services of persons with disabilities themselves (Indispensable if you advocate for mechanisms based on universal design)
- Enhancement of social resources in the community (so as not to reverse the flow "from institution to community," which is now available thanks to the assistance benefit)
- Systems focusing on individual services rather than structures (to be able to get individual support which a person with disability needs, rather than general services or housing)
- Mechanisms of support focusing on recipients, not on service projects (support-givers)
- Systems of support that make independent living possible even while parents are alive (by accessing social services), not "an institution after parents pass away"
Too often attention is paid to financial issues, but I hope that discussions and studies focus more on our historical issues and concepts.
