Text Ingolf Österwitz (?), Hildesheim, May 25th 1998
It is generally agreed that the standard rules of the United Nations on equal opportunities for persons with disabilities are the most extensive and most progressive human rights instrument in our field. This opinion seems to be rather exaggerated, for the draft of a general convention from the year 1987 ("On The Elimination of all Forms of Discrimination Against Disabled Person") was declined by the general meeting of the UN. No-one wanted an instrument which was binding according to international law. Back to the standard rules: according to the European Disabled Persons' Forum and other NGOs, these are an unprecedented international political commitment to persons with disabilities. Innumerable international seminars organized by the Forum, by the EU and by non-governmental organizations has taken place in order to praise this document. It is a political instrument with which social changes in favour of disabled people can be brought about. A vague hope after putting the recommendations into action is addressed to the governments in question, but within the last 4-5 years, at least in our rich country, there has been no global improvement according to the recommendations concerning the standard rules. I suggest that we discuss this in the talks about the conditions and developments in our countries. On the contrary: we must admit that Germany has seen a change for the worse of the situation with regard to disabilities. With the introduction of the nursing insurance system in Germany, more and more disabled people are being put away into homes or treated according to the motto "clean and well fed" as intended by the medical model of disability. There can be no talk of self-determination: on the contrary, patronizing and petty and incorrect supervision have increased. We were classified as cases of nursing and, from a sociological point of view, assigned to the lowest social category from being a subject to a passive object of care and economic exploitation. Cases of nursing enjoy no social prestige, and the experts are constantly in search of the cheapest possible care scheme. The resulting reduction in social prestige is enormous and can be experienced every day. Persons with disabilities feel menaced in their personal identity and their self-esteem.
But now, back to the success which can be the result if disabled people become organized and form local and regional groups.
The municipality of Erlensee is a good example of how successful the work of a local self-help organization of persons with disabilities can be. They have taken their rights into their own hands and built up an organization of their own which offers services such as a transport pool, personal assistance, information and advice. The group is also an essential factor in local political work with regard to the social field. People have become more conscious of the interests of disabled people, and this has found expression in concrete measures. The accessibility of many buildings and facilities as well as social acceptance are results of the work of disabled citizens in Erlensee.
This has not been given to the disabled persons of the municipality on a plate. They got together, articulated their rights as equal citizens and fought for the realisation of those rights. All members of Mobility assembled here can profit from the hard work the group has done.(thank you friends here and in Erlensee) In this way they have also shown that self-determination, participation and integration cannot be ordered from above but must be initiated by the people concerned.
Purpose of Rule 18 on Organizations of Persons with Disabilities
The states should recognise the organizations of disabled people as the representatives of such persons at national, regional and local level. We should have advisory status in all decisions regarding disabilities. This status can be guaranteed by co-operating on public committees and participating in essential political decisions.
The formation of local groups should be stimulated and supported financially. They are an instrument of self-help and thus a forum for exchanging views and expressing requests and needs. Planning, realising and assessing measures concerning the lives of disabled people are part of this.
Realisation of Rule 18 in Sweden
Rule 18 is a clear appeal to the states and all subordinate organizations to promote the right to self-organization of persons with disabilities. This is the only way in which a democratic representation of interests can be realized. The formation of - for example - personal assistance services (Rule No. 4) managed by the users will also only be possible if we have strong organizations of our own. Barbro Carlsson, director of the Shia development service in Stockholm, had the following to say on this subject:
"Not until we had become emancipated from the degrading assistance structures of the charity associations were we able to become the partners of government, parliament and administration in all questions concerning persons with disabilities. It was then also possible to build up assistance structures of our own which could also be used to help people with learning difficulties".
Also Adolf Ratzka comes to same conclusions.
I would like to add that the law on personal assistance passed in Sweden in 1994 only became possible after emancipation from the charity organizations as the traditional suppliers of services and formation of strong organizations of their own.
The PA act entitles people with severe disabilities to get directly funded to build up their own personal assistance scheme to lead an autonomous lifestyle. Depending on the need assessment, the financial compensation flows directly to the users. Adolf Ratzka and his friends from the Stockholm Independent Living Centre (STIL) have been played a major role in the establishment of all innovations concerning a personal budget. Until then, there were only municipal and charitable structures of home care which offered a third-rate service without any influence of the users. They had to adapt to the structures instead of the structures adapting to the needs of the users.
Also people with severe learning difficulties can enjoy the advantages of the new law.
Three national organizations are involved in the project: the Swedish Organization of Disabled People (abbr. DHR), the Swedish National Society for Persons with Mental Handicaps (abbr. FUB) and the Swedish Association of Neurological Disabled (NHR).They started their work on personal assistance schemes in the beginning of 1990. This made them and STIL competent partners for the Swedish Parliament and Government before the Personal Assistance Act came along. The law itself was put into practice on 1st January 1994. Thus, the Swedish organizations of disabled people had a great influence on the contents and operation of this law. As far as I know the charities played no role in the process of discussing all items essential to this act.
I have chosen this concrete example from Sweden in order to show you how important strong organizations of our own are for the development of structures of assistance and other services.
Current situation in Germany
We are still far from this state of development in Germany. When the government makes plans and projects in the disability field, the first to be asked are the big charity associations as the suppliers of social services. This is not surprising, for politicians and administration officials are often also members of the big charity organizations. Politics, administration and charity associations are thus closely related, a fact which makes it difficult for the organizations of disabled people to exert influence on decisions. Also, many groups and organizations of people with disabilities have joined forces with the charity organizations in order to obtain a minimum of financial support. They have sold themselves for want of money. According to Rule 18, we demand direct financial support of the groups and associations by state means. This can for example take place via the state lotteries as is already practised in other countries such as Spain, Finland and Sweden.
If we really want self-help in our organizations and are honest when we say "We are experts with regard to our disability, needs and interests", we cannot at the same time belong to a charity association. They still apply the medical model of disability and the disability movement has been critical of defining us as tragic, dependent and unable to speak for ourselves.
Discrimination on the part of the nursing insurance system
With the introduction of the nursing insurance to Germany, the situation has become even more degrading. For example, no-one can request a care service for two hours, but only for certain services such as - for example - washing, toilet assistance or the preparation of breakfast. And that has to be done as quickly as possible. For this is how the care services make their money. This is exactly the situation which we have in our country with regard to the work offered by the private care services and charities. They do not make a contribution to our self-determination according to the German constitution and the standard rules laid down by the UN. I must say this so straightforwardly in order to draw attention to the increasing violations of basic human rights with regard to people with disabilities in our country.
The old wisdom that organizations for persons with disabilities have different interests than organizations of persons with disabilities is just as valid now as it has always been. Unfortunately many of us have not yet noticed this basic difference in interests. If once we get through to the minds of a large number of people with disabilities, they would become members of our organizations and start to play an active role to improve our conditions for a self-determined life. Generally the movement of disabled people in Germany suffers from the fact that many people make demands but that only a few are prepared to take on responsibilities in their own organizations. We have to make good offers to join us.
The disabled fellow citizens of Erlensee have clearly become aware of these differences and acted accordingly.
I wish you all luck and a successful and pleasant meeting.
Thank you for your attention.
Siehe auch Standard Rules