Independent Living Movement and Social Reform from Below – Shoji Nakanishi

Paper for the Workshop Session “What Is IL?” on September 6, 2007 at the 7th DPI World Assembly in Seoul, South Korea

Independent Living Movement and Social Reform from Below

Shoji Nakanishi
President of Japan Council on Independent Living Centers

Many of persons with disabilities (PWDs), who account for 10% of world population, have been left as the discriminated weak in poverty. Capitalist society gives the highest priority to economic value, and emphasizes efficiency and productivity. This capitalist value puts PWDs into the lowest class of society. With this recognition of the situation, I have continuously raised the questions “how we could improve social status of PWDs, and how we could realize the society where PWDs have more respect by overcoming the view of seeing them as inefficient and unproductive,” and sought for answer for more than twenty years.

In searching of the answer, I met independent living (IL) movement and learned a lot from its philosophy. I learned that PWDs can facilitate their own social participation not by overcoming their disabilities with forced rehabilitation, but by reforming society more accessible and inclusive. IL movement contributes to social reform by uncovering PWDs’ needs, disseminating needs to public administration and improving the social status of PWDs. In this presentation, I also mention the possibility of implementation of IL in developing countries.

1. Uncovering PWDs’ Needs
Now, we can see the emergence of accessible societies allover the world. These societies, however, are not the products of proactive measures by public administration for disabilities. Rather, in the basis of accessible environment of these societies, there are always the needs of persons with severe disabilities who had to live in the communities without mobility by, such as, wheelchairs. The birth of accessible societies is attributed to their needs.

In the social system with difficulty in uncovering their needs, true measures for disabilities hardly come out. So, what can we do for uncovering and reflecting their needs into society? Even though PWDs have the needs, but are isolated each other, all they can do is just tell the needs to family members or surrounding persons. To promote their needs into society, the formation of PWD-led organizations is necessary. When persons with same needs gather, they can raise louder voice which is hearable to governments.

In developing counties, however, specific government measures against poverty of PWDs are not usual because many other people are also suffered in similar conditions. And also in the conditions of poverty, organizations by PWDs tend to target for those who have minor physical disabilities. Persons with real difficulty in mobility, especially those who lost functions of both legs and arms, are often neglected their voice. The needs from organizations by persons with minor physical disabilities tend to focus upon only the issue about employment. Lucky ones who obtain jobs often seek for only higher payment and forget the needs of other disabled persons.

On the other hand, IL centers, which are run with the severely disabled persons, can uncover and promote more important needs for accessible society. Assistance for daily living, support for housework, accessible toilet for wheelchair users, supportive devices, and pension system are examples of the needs. The needs also include accessible road and transportations for wheelchair users, and accessible public spaces such as shops or educational institutions. These needs can be uncovered and promoted only when persons with severe disabilities become the core members of movement organizations.

In IL center, those who have minor disabilities take supportive role in cooperation with severely disabled persons. They put priority not on their individual interests, but on the realization of the needs of whole disabled persons. With the thought about whole PWDs, IL center can be the place of mutual cooperation and improvement of life. As a result, PWDs have strong bond each other.

2. Dissemination of Needs to Public Administration
To bridge the needs of PWDs to public administration, we choose a person with the most severe disability as a model who can integrate and represent the needs. IL center supports the model person for being able to live in community. Then, the needs of every PWDs in community appear in concrete shapes. The needs, for example, to access to public office and library, to have assistance for daily living, and to have income secured for house rent and utility, are soon exposed as demands to public administration.

For the side of public administration, launching measures targeting for the model person is more realistic and achievable because it can plan and implement measures with less financial burden. It is impossible for any developed countries to change whole in a moment. Important point is whether we take a first step for gradual process of improvement. When we take the first step, the model project opens the door to the next projects for improvement.

Once the community living of a disabled person as the model project starts, it is followed by the other person, and then, by the third person. The more the number of persons with disabilities seeking for the life in community grows, the more the movement for accessibility develops. When the nation-wide demand for the improvement of accessibility appears, the situation becomes easier for public administration to decide comprehensive policies for accessibility. The reform of society is realized through the communication with public administration to disseminate PWDs’ needs.

The most severely disabled person rents a house and lives in community with personal assistance service from IL center. Then, he or she accumulates experiences and know-how of independent living. This accumulation offers the opportunity of job to that person to relay experiences and know-how to other disabled persons who want to live in community. Experiences and know-how include ways to reform house accessible, knowledge about available social resources, methods to build human relationship in community, and necessary knowledge and negotiation ability to improve workplace environment. That person tells these experiences and know-how to other disabled persons through IL program.

IL center is established on the basis of the needs of the most severely disabled persons. It provides services to fulfill their needs through, such as, “peer-counseling,” “independent living program,” or “personal assistance service.”

Other than these services, IL center also takes in charge of activities which are commissioned by public administration. These activities include supports for the independence of persons with disabilities, research on accessible environment, and recommendation of policies to public administration. Communities with IL center have the system in which public administration works together with PWDs for policy-making based on their needs. Communities with IL center have accessible train stations which have accessible toilets for wheelchair users. On the other hand, train stations in communities without IL center often do not have slopes and toilets because there is no channel to hear the voice of persons with disabilities. For public administration, development of the relations with IL centers is indispensable to recognize their true needs. And with the policy recommendation from IL centers, public administration can implement effective policies.

It is only after PWDs are secured the right to live in community and have accessible social environments that all of them can be included into society. Then, they can reach to workplace, have income, and escape from poverty. I would like to emphasize again that such change of social system begins from one severely disabled person.

3. Improvement of the Social Status of PWDs
Activities to improve the social status of PWDs should have the aspect of social contribution for public interests. PWDs in such activities also should have consciousness that they not only work for their own needs but also for other socially disadvantaged persons.

For this, those who work in activities need to change their positions from served by social benefits and charity to support other persons. IL centers make the change of positions possible in following way:
At IL centers, the most severely disabled persons, who are seen as the least efficient and productive, are required as the most significant staff. The reversal of ordinary social values is realized hereby. The most severely disabled persons can obtain jobs at IL enters, and escape from poverty. Then, IL centers become the workplaces where disabled persons can recognize their contribution to society with utilizing their disabilities. In collaboration between IL centers and public administration, contribution of PWDs wide spread into society.

When the issues of the most severely disabled persons are addressed, the society becomes good place to live for other persons, such as, those who with minor disabilities and elderly ones. Since the most severely disabled persons have job due to their disabilities, those who have minor disabilities can also obtain jobs in the light of their disabilities.

I can mention an example of job for severely disabled persons. In corporations, it is often happened that workers and their family members have disabilities. In such cases, they tend to get lost because they do not know how to face with disabilities. However, if these companies have counselors with severe disabilities, problems are addressed. Counselors with disabilities can give them right and necessary advices emphatically. The movement by disabled persons has developed counseling method that is called as “peer-counseling”, which is the most useful in such cases.

This kind of job is the utilization of experiences and knowledge attributed to disabilities, and the effective use of social resources. PWDs can work with dignity and joy because it is their experiences and knowledge which are required. Previously, they were abandoned at the corner of society as the least efficient and productive. But now they participate into the society with significant position as the providers of welfare services. When the society can utilize all the people, it also can make them happy.

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