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Self-determined life

Already in the early eighties, the umbrella organization of the Swiss self help of people with disabilities (AGILE, formerly ASKIO) defined four major objectives. The first and foremost of these, is self determination, the basic right to decide for oneself how and where to lead one's own life. Along with this demand come integration, existential security, and equal opportunity. What many people take for granted in terms of their own lives is for someone with a disability not so easy to attain. People with disabilities are dependent on help, including financial help, in order to manage their everyday lives. As a result of their particular dependency, people with disabilities often experience that their lives end up largely being determined for them by professionals and institutions.

The Independent Living Movement began in the seventies in the USA. During this time people with all categories of disabilities joined together in an active emancipation and civil rights movement. The movement was a reaction to the commonly shared experience of social exclusion. Regardless of the kind of disability, people found that their lives were largely determined by prejudice, ostracism, and unnecessary, thoughtless obstacles. Moreover the help-structures put in place by non-disabled «experts» often proved more of a hindrance and more disabling than the actual medical conditions from which people with disabilities were suffering. It was their experience (and ours) that people who are not able to correspond to the traditional norms and expectations are shut out of participating in communal life by means of all sorts of architectural and other barriers. They are prevented from realizing their potential and are made more helpless that they actually are.

As a result of this, the SL movement refrains as much as possible from differentiating among different forms of disability on the basis of medical or insurance-related categories. These are distinctions that separate one person with disabilities from another and weaken the political strength of various groups. Instead we aim to build on our common experience and change the social conditions that make people who are different into invalids.

Instead of «help for helpless» provided by non-disabled experts, the SL-movement puts the emphasis on «empowerment»: people with disabilities are the experts with regard to their own lives. The point is to empower people to be able to make as many decisions as possible for themselves; to take their lives in their own hands. Instead of placing people in disability ghettos, separated according to categories of disability (with the particularly severe cases removed from the community altogether in order to be «cared for»), the SL-movement is fighting for «personal assistance» (PA). With this care model, people with disabilities remain in their original community environment. They receive the funds necessary to employ, train, manage, and also replace helpers, whose assistance allows them to live independently. These helpers are hired to provide services according to the particular needs that arise out of the specific disability. The movement has been able to show that this form of direct help (subject financing) is the most efficient use of the available funds as well as being the most in line with the demands of human dignity. This form of help actually draws on the strengths and abilities of people with disabilities, as well as of their families, and the surrounding environment. Capitalizing on these strengths is both more efficient and humanizing than shutting existing strengths out of the picture and replacing them with the help of expensive professionals. Personal assistance has increasingly replaced the institutional model in many European countries, above all Northern Europe.

Everywhere where people with disabilities decide to fight for this common cause, the SL movement establishes working offices called Centers for Independent Living (CIL). There, people with disabilities counsel one another and offer one another mutual support (Peer Counseling). The centers also organize services and launch political programs and actions.

Since the 80 s the aims of SL have been discussed throughout Europe and also in Switzerland, often under the title «changing paradigms». Despite this, the first Center for Independent Living (ZSL) was only established 1996 in Zurich. There had been little in the way of a radical change of thought in Switzerland before the center opened. The problem of having no say in the conduct of ones owns life was not high on public agenda. In all likelihood the reason is to be found in the solidly financed - in comparison with other countries - and thus relatively comfortable care and treatment system in place for people with disabilities.

The ZSL Zurich champions the right to self-determination on the part of people with disabilities as experts in their own affairs. To this end, the center works to establish a basis in the legal and social insurance structures that would enable people with disabilities to live a life outside of institutions as equal members of the community. With this objective in mind, the center fights against exclusionary structures, whether they are of a technical, legal, or architectural nature. Additionally the center seeks to achieve the inclusion of those with disabilities in the decision making process whenever their interests are being negotiated - so that they can have a voice in their own affairs. The center also pursues the goal of state financed personal assistance at a level that covers actual individual need.

By Peter Wehrli


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