Selbsthilfe behinderter und chronisch kranker Menschen in Deutschland

Druckdatum: 22.04.2018
Erstellungsdatum: 08.11.2004

The Concept of Independent Living
Time and again I hear so-called experts in the rehabilitation field asserting that severely disabled people are not able to lead an independent life, that they are dependent on assistance and that self-determination is therefore impossible. I would like to demonstrate that, with the requisite funds and personal assistance, physical dependency can be overcome and independence achieved. Independence is a mindset, not a muscular function...

English Version of German Article "Das Konzept Selbstbestimmt Leben".

March, 1995

Text Ingolf Oesterwitz

first published in HELIOSCOPE Summer 1995, Brussels

Self-determination as a social and political movement

In the late 1960s, people with a variety of disabilities got together in America to form a civil rights movement in order to protest against clinical living conditions in residential care, and in response to other disadvantages encountered in the education system, at work and in practically every sphere of their lives. The founders of this movement were people who needed a relatively high level of personal assistance in everyday life. Their key demands were the right to express their own needs, an independent way of life outside the confines of an institution, self-determination, control over assistance systems, assistance and involvement in decision-making on all issues relating to disability policy.

Adolf Ratzka (Sweden) put it even more clearly when, in a discussion of various forms of support, he stated that the aim of disability policy must be to give disabled people, individually and collectively, more social power. More power implies having adequate funds, defining social situations and setting the agenda. Funds should therefore he provided directly to the individual concerned, for example in the form of a personal budget as is the case in Sweden, Denmark and the Netherlands.

This is a new approach to disability. The independent living perspective postulates that, primarily, the problem of "disability" lies not with the person affected, but with the psychological and physical barriers society erects, and the often rigid support structures it sees as the answer. It is also a philosophy of disabled people's needs. In this it differs fundamentally from the traditional philosophy of rehabilitation, which is therapy-orientated and essentially geared to the adjustment of disabled people to existing working and living structure. When this is successful, integration is said to have been achieved; otherwise, the individual is steered towards a rehabilitation "dead end". As Jeff Bernard (Austria) made clear in his article "Kampf um Zeichen und Bedeutungen": "special institutions and special measures, of whatever kind, are not, contrary to the assertions of their proponents, the first step towards integration, but the very opposite. Only integration as such is integration; integration is therefore the negation of special institutions and methods."

Autonomy versus heteronomy

Every democratic society guarantees the individual the right to dignity and self-determination. The latter applies most importantly to accommodation, leisure, work and the choice of career, religion, sexuality and lifestyle in general. Disabled people who require a high level of care and assistance in their daily lives are often deprived of all those options except as regards their religion. On medical and financial grounds, medical officers, charitable organisations in charge of residential homes, and the welfare authorities all press for institutionalisation in cases where a high level of care and support is required. Do the nursing homes see each disabled individual with high assistance requirements us a new source of income? What is sure is that people in residential care lose the right to decide when they go to bed, get up, shower and perform various other intimate activities. Care plans regulate the daily routine, day in, day out. All-in nursing fees often go hand in hand with all-out arrogation of individual choice and control. Research in Sweden has revealed that there is no form of assistance provided in an institution that cannot equally he given in a family setting or in the person's own home.

The concept of independent living aims to restore to disabled people the control over their own body and lifestyle that other people take for granted.

This implies that all the necessary assistance provided in an institutional setting can equally be given in the person's own home. The concept of independent living postulates that the problem of care and support relates primarily to the rehabilitation authorities' response and provision rather than to the individual. Much of their care provision is a throwback to the hospital model of the early Middle Ages, treating disabled people as a homogeneous group.

Independent living also means living in one's own home - where we have control over who we see and how often. Only when we have the rights that go with living at home do we really have a say over our daily lives. Independent living also means being in a position to make an absolute maximum of decisions for oneself. Another factor in independent living is access to the information, advice and resources needed to determine how we live our lives. Independent advice must therefore be available, for example from other disabled people (peer counselling).

Disabled people as consumers of services

Much of the social service provision for disabled people has more to do with the way the professionals involved view disability and their support function than with the expectations of those directly concerned. We must do away with the paternalism in thought and deed which all too often casts disabled people in the role of victims and passive recipients of care, if they are to have any chance of self-determination and thus personal development outside the confines of institutional care. New support structures are required, where disabled people are no longer fobbed off with benefits in kind, but instead become consumers of services on the open market. They must accordingly be given the financial resources they need to gain access to various assistance services.

Personal assistance as the key to independent living

Adolf Ratzka states that personal assistance is one of the keys to an independent life and lifestyle. The assistance disabled people require is not fundamentally different from the help others need to develop and maintain their individual lifestyle. Personal assistance gives disabled people access to outside support to compensate for things they find difficult or impossible in their daily lives.

"Personal" implies that the assistance should be geared to the needs and wishes of the disabled person. That way disabled people take their rightful place as the employers of personal assistants. Those who cannot or do not wish to deal with everything themselves can also benefit from joining forces in co-operatives to organise assistance services.

Society's role in independent living for disabled people

All-in nursing fees agreed between financing bodies operating above local level and service providers regularly result in the all-out arrogation of disabled people's freedom of choice: the latter are institutionalised and given no, control over the resources which are theirs by right. disabled people are grouped together for treatment in accordance with the institution own view of its function in the held of disability. New thinking on care and assistance is urgently needed if disabled people are to enjoy a return to normal living conditions and self-determination in their daily lives.

Individual nursing fees tied to the person requiring assistance would be a step forward. Provision must be made for a non-means-tested personal budget paid directly to the disabled person, as exists in Denmark and has more recently been introduced in the Netherlands, the United Kingdom and Sweden. This is prerequisite for self determination, as it places those concerned in the position of consumers and of forces for change on the market for assistance services. As already mentioned, the establishment of assistance co-operatives helps all those who cannot or do not wish to organise things themselves. Easy access to technical aids, without the need for senseless medical reports for example, is another way of promoting independent living.

Recent announcements of new initiatives in Europe point to opportunities which could show the way forward for all the Member States of the European Union. Yet emancipatory options promoting independent living are often rejected on the grounds that they are alien to the national culture of the welfare system and cannot be imported - a handy excuse employed by hidebound bureaucrats. Good, practical solutions which promote self-determination and improve quality of life are always workable. An information policy drawing attention to good practice in the field of self-determination and integration for disabled people is needed to change attitudes and assist in the dissemination and implementation of practical solutions in many countries.

The exchange and information activities carried out under the European Union's HELIOS II programme enable examples of good practice to be collected and made available to a broad public. It can only be a matter of time before such measures are introduced in numerous countries - unless, of course, those who want to make money out of disabled people by setting up ever more residential homes win the day.

Siehe auch Leitseite Neue Ideen