History
History and Philosophy of Independent Living Movement
In the United States, the 1960s was the era of vigorous civil rights movement by African Americans. As a part of minorities, persons with disabilities (PWDs) were also eager for the implementation of civil rights. Since then, the movements by PWDs have had strong influence from civil rights movement.
In 1972, Ed Roberts was about to graduate University of California in Berkeley. He had disability from polio and used wheelchair equipped with respirator. When he was a university student, he could use on-campus services, such as, assistance, housing, wheelchair repair, or peer-counseling. However, these services would be cut off with his graduation. Hence, he established Independent Living Center (ILC) in community with support from his family and friends. This was the beginning of Independent Living Movement.
In another countries in this period, however, the reality went to opposite from ideal direction. The government of Netherlands implemented policies of colonizing PWDs, and built large-scale living institutions “Head Dorf”. In the United Kingdom, the government promoted the policy of collective living of PWDs, and built group-homes with care. The world trend of policies for the living of PWDs was still headed to living institutions or group-homes except the cases of independent living movements in the USA and “focus house ” in Sweden.
The Center for Independent Living in Berkeley had four principles:
1. A person with disability should live in the “community” instead of “institutions.”
2. A person with disability is neither a patient who should receive medical treatment, nor a child who should be protected or a god who should be worshiped.
3. A person with disability is in a position to control aid.
4. A person with disability is a victim of “social prejudice” rather than his/her “disability.”
Up to this day, PWDs have been imposed life-long goals to become like non-disabled persons under the name of rehabilitation. For example, in the idea of rehabilitation, they have good evaluation if they can change clothes without help from other persons even though it takes two hours. The philosophy of independent living, however, considered that the use of assistance was not shameful nor hurting subjectivity. It declared the significance of choice and decision based on one’s own will. Rehabilitation was the only medical treatment in the limited period and should not be the base to control the life of PWDs.
Following CIL Berkeley, other IL centers were established in Huston and Boston in the early 70s. The amendment of Rehabilitation Act in 1978 propelled nation-wide establishment of IL centers. While ensuring disabled persons as key players in provision of welfare services, this act set the rule that the Federal Government subsidizes the establishment of IL centers.
In 1982, the National Council on Independent Living (NCIL) , umbrella organization of IL centers in the United States, was established. NCIL committees to advocacy activities to ensure PWDs have greater control over welfare services. Currently, there are more than 400 IL centers, including small ones, in the United States.
CIL encourages people with disabilities to make their own choices and works to open doors in the community to full participation and access for all.
“CIL is successful because it’s run by disabled people, our clients have hope when they see other disabled people managing their own lives ”
Judy Heumann ,head of international disability policy at the world bank
Europe
ENIL (European Network on Independent Living)
In April 1989, at the European Parliament in Strasbourg, over 80 persons with extensive disabilities coming from nearly two dozens countries participated in a 3 day conference on personal assistance. During this event the European Network on Independent Living (ENIL) was founded. ENIL is composed of individuals with disability and self-help organizations that support philosophy of independent living.
JIL ( JAPAN INDEPANDENT LIVING CENTRE )
In 1981, International Year of Disabled Persons, Ed Roberts visited Japan, and promoted IL movement.
However, they did not speak about services of IL centers at all. Because of this, it took some more years for the establishment of IL center in Japan. In June 1986, Human Care Association, the first IL center in Japan, was opened in Hachioji, Tokyo.
In 1988, Tokyo Metropolitan government set up a foundation. Since then, 25 ILCs have been established for 10 years in Tokyo.Today in Japan having about 130 ILC .
CENTRE FOR INDEPENDENT LIVING
CONCEPT
Independent living is a process of developing disabled person and movement of disabled person.
Independent Living as a process of helping or developing disabled person
Independence is one of human instincts that want to live and to make decision by oneself no matter how many limitations to his/her body’s condition.
1 As a process of helping disability person that emphasize on the feeling deep inside his/her heart.
- What are basic needs of human being?
- Disabled person that seems like he/she unable to develop and left lifelessly. What is the feeling that they had suffered?
2 The answer of helping and developing disabled person to make he/she live with happiness and dignity of human being is one can live by his/her own decision.
3 Independent Living Program has its specific method and pattern to help disabled person live happily and valuably.
- Development will took place based on their needs of disabled persons.
- Independent Living Center is just an informative supporter in many patterns, such the information of peer counseling and being role model of peer counseling.
- Training the skills for having happy and valuable life with dignity of human being. That is the cooperation between independent living center and disabled person himself.
- In case of severely disabled person that he can’t help himself, ILC have a system of personal assistance for helping disabled person to achieve their needs for living. This method also let the personal assistance not to lose their privacy.
Independent Living as a movement of disabled person
By learning the process for helping disabled persons by themselves for long time. It makes us believe that no one can completely understand disabled person other than disabled persons themselves. And there are no one can understand the person with high degree of disability or one who finding difficulty in living his / her life other than one who have similar degree of disability. Therefore,
1 Disabled person whom with severely disability that they can’t even helps themselves started Establishment of Independent Living.
2 Well established Independent Living Organization provides many services that should be administrated and quality controlled by disabled person. So Independent Living Center is an organization for disabled person by disabled person.
3 Establishing and operating of Independent Living Center have been through many obstructions such as law and social regulation. Therefore, the role of changing social perception must be done or initiated by disabled person.
1 Model of helping disabled person
1.1 Welfare Model: Welfare Model is helping disabled person with sympathy that based on common sense of other human being but not of disabled person. Helpers would be proud of their helping on disabled person but one that been helped will be inferior.
1.2 Rehabilitation: We start the rehabilitation first by medical model rehabilitation to enhance disabled person’s body to be more useful based on his/her disability. That make he/she have a better living. This method was lead by world health organization (WHO) and later on, the goal of rehabilitation was made much more clearly by International Labor Organization (ILO). But the practice is still depends on professionals.
Although the approach of rehabilitation seem to be good for social or professionals to find out the best way to help disabled person, but the disabled person participate just by doing not by brainstorming the method so that he/she still feel inferior. Because the creation of rehabilitation method still done by the professional not by disabled person. The important thing is that the professional or the rehabilitator agrees on disabled one that “no more rehabilitation”, one will be left lifelessly. Waiting for the day he/she will die without any help. Still today no one ever understand what kind of feeling of disabled person in this situation feel like.
1.3 Empowerment: The disabled person starts to feel uncomfortable because he/she is in receiver status that he/she could not express his/her opinion or be a part of his/her life’s concerns. So there had been gathered into organization for helping disabled person to be stronger, having more power and right in his/her concerns. E.g. participate in legislation process, be a model of self-developing and train the disabled person leader.
1.4 Equal Opportunity: Every disabled person considers on equality as same as on the others, being part of society and getting right, chance, glory as a human being.
2 Background
Ed Roberts, the father of independent living
Ed Roberts suffered from polio throughout his body except his throat and upper parts. He must use respirator all the time. He is the first severely disabled person who can get in to University of California at Berkeley in 1962.
In his early year in campus, he was limited his right to take exam because the university rule do not allow to have assistance during the exam. Due to this rule, he could not take the exam like other student so he decide to appeal to the university about the reason why he need to have personal assistance helping during the exam. Finally, the university accept his appeal that student with severely disability can have personal assistance to help writing the exam paper.
His living in the university, he thinks that there must be dorm that arranged especially for severely disability person. With the cooperation of Cowell Hospital they arranged Cowell Residence for university’s severely disability student in 1966. Then there had a few more severely disability person come to study at the university. The Cowell Residence was officially accredited by rehabilitation organization of federal government. Ed Roberts had been talking with others disabled person and opened his own room to conduct peer counseling with others disability student. The student organization by leading of Ed Roberts intended to be part of the university society. By setting up the organization called “The Strategies of Independent” that operate by disabled students and friends of them. And later on their idea had been spread out to the communities. In 1974 there was the establishment of Center for Independent Living (CIL), which administrated by disabled person. As the result of their hard working, the government started to realize the significance of such a type of organization. The government declared the Act called “American with Disabilities Act: ADA). Nowadays, there are more than 400 Center for Independent living located in such an important town throughout the United States.
Ed Roberts was now accepted as a father of independent living. He initiated to fight for changing in society start from inside his university at UC Berkeley. He lightened the idea of living independently. Bringing the living life of human being, the thinking and making decision by their own, no matter how disability they are.
3 Service Provided in Independent Living Center
3.1 Information Service
This service let disabled person know the vital information e.g. his/her own disabilities, idea of taking care of himself/herself that what can he/she do based on his/her disabilities, assessing and knowing himself/herself, the way of living through the idea of Independent Living and idea of training that will lead disabled person to be able to live independently.
3.2 Skill Training Service ( ILP )
This service will help participant set the goal what they want to do or what they want to be (in realistic). Having training plan and training for all level that in charge by experienced disabled staffs, which will be counselor. The disabled person himself will arrange the goal, training plan and carry on the training by himself.
3.3 Peer Counseling Service
This mean the disabled person who can already managed his own problem become conversation mate with other disabled person. There are some rules that let disabled person trust each other and start to share what the problem on his mind so he can get rid of the problem on his mind. (This is a combination of art and science in Independent Living matter)
3.4 Personal Assistance Service
This service help disabled person can do his routine job by his idea and his way. (Usually, the relatives of disabled person are tend not to allow he do anything or do by themselves instead of let disabled person do)
3.5 Advocacy ( Right Protection Service )
- Family level
- Community level
- Nation or International level
自立中心运动历史与哲学
在美国1960年代，有很强的黑人民权运动，其中一组的残障人士（pwds），也参与这样的运动，这是美国人权运动的开始。
1972年Ed Robert,将毕业于Berkeley大学，他是一位患有严重的小儿麻痹症人士，必须依靠辅助器呼吸，当他还在大学的时候，他拥有机会使用校方所提供的实施和设备，例如：私人助理，轮椅维修，和辅导，等等。
但是，当他毕业后，没有机会在使用这些服务，在得到家人和朋友的支助下，他成立自立中心（ILC），自立中心运动就这样开始了。
在同一时间，其他国家对残障人士一方的发展刚好相反，荷兰政府实行大规模的，政府设备中心，将所有的残障人士(PWDS)聚集住在一起。
在英国，政府大规模的建立家居养老院，同时给予照顾服务，世界许多国家也朝向，这方向。除了美国和瑞典。
BERKELEY自立中心，四大（哲学）原则
1. 残障人士应该居住在社群，而不是政府中心
2. 残障人士不是病人，或是一个需要保护的小孩，或向是被崇拜的神
3. 残障人士拥有自己的自主权
4. 残障人士是社会扁见的受害人，而不是他们残缺
至到今天，修复疗(rehabilitation)的过程，残障人士被订了生活目标，要把自己，当成是无缺陷者，例如：没有人的协助下，换衣，即使要花上2 个小时。
自立生活IL 的哲学意示里，如果需要别人帮助不是一件羞耻的事，依据个人的意愿和需要
修复治疗是一段有限制医疗治疗，而不是协助残障人士，终身的根基。
随着 CIL BEKELEY 中心的成立，在70年代早期，还有其他的中心成立在 HOSTAN 和 BOSTON ，1978年得到，联邦政府的扶助金，让他们建立更多自立中心。
在1982 ，自立中心联合团体成立NATIONAL COUNCIL OF IL ( NCIL)
NCIL 委员会，扮演辩护残障人士，确保他们享有更好的福利，目前在美国，现在有超过四百间的自立中心。
CIL 鼓励残障人士，做自己的选择，参与社会的主流
自立中心成功的成立，主要他是由残障人士本身管理，让我们的对象，感到残障人士是有希望的，因为看得残障人士，能够很好的处理自己的生活。
Judy heumanm
欧洲
ENIL （European Network on Independent Living ）
1989年．在Strsbourg 会议，80多位来自超过20多个国家的，欧洲残障领袖，参加了三天的会议，并组成了欧洲自立联系，鼓励扶持自立生活概念。
日本
JIL ( Japan Indepandent Living Centre )
1981年国际残障日Ed Robert 到日本探访，并把这概念推广。
但是没说出自立中心的服务性质，因为这样经过数年日本自立中心。
那是在1986年，日本第一间自立中心成立，东京Human Care Aassociation ( HCA) 。在1998 年得到东京联邦政府基金的支助，现在日本有超过130所自立中心。