Dear friends

Thank you for giving me the not so easy task of talking about human rights for deafblind people. So much is happening at the same time in this world. After what happened on the 11th of September in the USA, it is in my opinion even more necessary to learn from the past and to start building a society with full participation of all of us, no matter which country or culture we live in. It is not easy. There is a war going on in Afghanistan and in so many other places and there is still enormous poverty in the world and 30,000 children die every day for several reasons.

I want to say something about the different models or views of society we use, and the consequences for society and for us deafblind human beings. I hope you can recognise the general developments I am describing.

First of all there is the view that I would call: "The brotherhood of men" There was (and still is) a picture in people's eyes and minds of society built for young, rich, healthy and wealthy, white men. This is the kind of mirror where we can look in. We all want to have a big house, much money in the bank, drive a car, use the newest equipment in the kitchen and on the internet and have the power where ever we are, so we are in peace! The problem with this view is that it creates winners and loosers. Women, older people, disabled people, poor people, children and so on are excluded. They don't belong to this type of society and that means most of the world's population. Deafblind people do absolutely not belong to this type of society, even if they wanted to. Charity organisations (often with volunteers) try to make life a bit easier for deafblind people by organising meetings for deafblind people with social activities of different kinds. No political activities for deafblind people, they are invisible and unheard. Please understand me well! I don't want to say anything bad about volunteers!

The second model you could call: The social economic model. Society consists of economic units, companies, governments, states. States, governments and other economic units have to take care and empowerment the social economic weak groups of people. The stronger shoulders have to carry the burden for the weaker ones. Taxes or other contributions are being paid and services are being provided instead. In our case it means that deafblind people can get some kind of education, some kind of guide-interpreter services (volunteer or paid), deafblind people can get a kind of pension and even the development of some sort of deafblind organisations can be funded by private organisations or by the governments. Although we may not like to be so depending on economy, we know that without any financial support we are not able to develop our organisations of deafblind people. National deafblind organisations are often trying to get support from the ministry of social affairs. There is here a certain amount of political activities by deafblind people, but we are still seen as people who need care. We need to focus on our problems and our needs to get what we want.

The founding of the United Nations 53 years ago created another model of society. Society should develop into a place where all human beings have the right and the possibility of full participation. We can say: society is unhealthy, disabled, deafblind as long as we cannot fully participate in it. To build a society of full participation different tools have been developed. Some examples: The International Covenant on Civil and Political Rights - the International Covenant on Economic Social and Cultural rights - the Rights of the Child Convention - the Convention on the Elimination of all forms of Discrimination against Women - there is one against racial discrimination and one against torture. These tools are covenants, agreements. They are not laws and there are no sanctions yet, although in Europe there is a strong tendency in that direction. In the human rights commission of United Nations the discussion has started that also people with disabilities have human rights and maybe there will come a covenant on the human rights of disabled people. Very important for this development are the "United Nations Standard Rules on the Equalisation of Opportunities for people with disabilities"

This human rights approach means that society has to change radically, based on equality. I would like to mention the International Classification of body functions and disabilities, called Icidh-2, a new document from the World Health Organisation. In that document the World Health Organisation tries to make a scientific description on how people are functioning and what society has to do to make everybody equal. It means a lot of special measures from society to make it possible for deafblind people to have full participation. Try to imagine what needs to be done to give us for example: accessibility to all information and all parts of society, education, a decent job, a family life and so on.

These demands from society are quite easy to recognize for us. More difficult is the part that we have to change ourselves. We totally have to change our attitude and self esteem! Of course we have the fight of being deafblind, loosing vision and hearing and that can be very difficult, but we should also try to focus on our capacities and the qualities we have developed just because we are deafblind. We are not passive, lazy or slow. We have learned to be creative, to concentrate on what we are doing, to live with the fact that we are all different and to celebrate our diversity with all the different communication systems we use here. Our power can also be that we have to continue trying to understand each other, because: nothing goes automatically in our organisations. I mean full participation means also active contributions. I give you some examples from my personal life how difficult the process of changing self esteem is: I grew up in an institution, where violence, also sexual to us boys and among us boys was so usual, that I built a thick skin of protection around me not to feel the pain. I am still trying to learn to protect myself in a different way, because I have my dignity as a unique individual. I was so used to the fact that I could not understand people, because I had no hearing aids, I was used to the fact that people did not respect me. I have learned to use all the knowledge and creativity in music and art I have to make people understand that I am capable of contributing to society. This example is very individual, but it works also for national and international organisations. We all here have a big responsibility on a national and international level to show that we are persons, personalities with dignity, who have a special contribution to society. "Nothing about us without us" means that we all have to fight for the most basic human right to be there, to be accepted as a person with a unique disability, and with unique qualities and capacities in other words the basic human right to exist. Thank you for your attention.

I