25 years of Independent Living in Sweden
Panel: Independent Living abroad - global perspectives,
speech by Kalle Könkkölä
[Intro in Finnish].
Do not worry. That was the only Finnish I will be using. You know Finland and Sweden were one country 200 years ago. Almost everyone in Finland can speak Swedish but very few Swedes can speak Finnish so I always like to speak Finnish in Stockholm. In one area we are more educated than Swedes.
It is really nice to be here. I have a feeling that, next time we gather, we will be in a South Pacific disability movement veterans’ home. We have been working such a long time now that, now it is time for the young generation to take over, and then we do not have to be in the rainy Helsinki and Stockholm. In the winter that is terrible. That is something we can agree on. Summer is fine.
I like to tell you something about the history. It has been fascinating to hear about all these years and remember what happened in Finland during those years. 1973 we started an organisation called Threshold. When I say we, I mean that, we were a handful of disabled students at the University of Helsinki. In the first period we were very much involved in how to make it possible to study at the University of Helsinki. There were so many student issues, on how to organise lecturing rooms and transportation and so on. We solved the problems very quickly because at that time in Finland people were not used to disabled people being active. We have to remember that Finland 35 years ago was totally different from what it is today. Luckily most of the changes are positive. Not all, but most of the things are positive. I mean in 1973 you did not see any disabled people anywhere, only if you went to institutions. That was the place where you could meet disabled people. Those who were not in institutions were in their homes. They could never get out of their homes. Most of the buildings were not accessible. They still are not but some of them are better now.
The whole attitude against disability and disabled people was so different. We were miserable. We still are but we do not like other people to know that. When we were out in the streets people came and spoke to you and felt so sorry: “Oh, oh, how terrible. You have a polio, how terrible.” I did not have a polio but still it was terrible. That was life in that time. For me, I was lucky I did not go to special school. That was one lucky moment in my life that, my parents did not let me go to the special school. I think that saved me from many problems. Anyway, I did not see any disabled people . If I saw another disabled person I went over to the other side of the street, or I tried, I could not go by myself. I had a feeling I wanted to go nowhere near that persons because that person might see that I was disabled too. That was terrible. I think you all have had this experience in some part of your life. Especially in childhood you have this teenage problem. Nowadays it is much more nice to see disabled than non-disabled people, although I do not hate non-disabled people. That is a misunderstanding in Finland. I like non-disabled people. They are OK. There is nothing wrong with being non-disabled. Some people say that we all are disabled but we are not all disabled and I am happy about that.
In that time, the organisations of disabled people were also terrible because they were run by either non-disabled people or very slightly disabled people and they were very charitable. We, who were severely disabled, were like the objectives and had nothing to do in these organisations. This describes the atmosphere when we started Threshold. We did not call it Independent Living. First of all, Independent Living sounds so stupid in the Finnish language because “independence” belongs to The Independence Day and Independence Day in Finland is a serious issue. We have had so many wars with Russia. On Independence Day you never smile because we remember all the generations that have been in the wars. So it was terrible, a terrible time in Finland. Later, we realised what we are doing in Finland. In fact there are a lot of similarities between Independent Living and human rights and our approach in Threshold. The name is funny. You can hear that I was a hippie when I was young. Threshold is this hippie idea that we come from one room to another room and we can leave something behind and have a new world. Still in carrying the name this current stays strongly.
We had some principles that we still keep. We were against institutions. We were against charity. We were not only against but we were promoting some things. We were promoting that we are citizens. We were promoting that we have the right to make decisions about our own lives. These were the basic ideas. A fifth idea was that as an organisation we do not do services. We saw, at that time and later, that there were a lot of services provided by disabled people’s organisations and nobody was criticising these services because there were no consumers. Nobody was representing those who were living in institutions run by organisations of disabled people. So that is why we decided that. That is also maybe one reason that personal assistance services in a way proceed in Finland quite well. Nobody has really been able to start an institution like STIL who organise this. Now we are coming to the phase where we do this.
We also have this multitasking and sometimes we might have tried to do too many things. The fact is that if you look backwards 35 years in Finland, in those days you did not know what you could achieve. Some things were easier to achieve than others that, we thought would be easy and, which we have not reached yet. So you have to try everything and then look back and see were you are successful. Sometimes it is a bit problematic because you are doing too many things and then you become too weak but we have also found new ways to solve this problem.
From the start we have seen disability as a political issue, a human rights issue and not a medical or even social issue. It is a strange thing that disabled people organise according to their disabilities. At the same time as, we demand that we do not like the medical model, we have the right finger federation of disabled people and the left finger federation. In fact, we organise ourselves medically and then we fight against it. I also belong to the Muscle Disease Association in Finland but I have never been very amused by this. It is much more fun to be with different disabilities. In the Muscle Disease Association we are debating what rare disabilities we have. “We are only three. Oh, we are only two in Finland.” The competition is won by the persons who are none in Finland, because I am a Swede. A political approach and a human rights approach is difficult to get to and I think it is quite a long way to go in Finland before people can understand.
In the 70’s we organised a lot of debates with different politicians. The result was that some of us became politicians and then we stopped because it is not so nice when our friends are asking nasty questions. It is really difficult to get through the message of what we mean. For example the issue of personal assistance services, we have tried now for more than 20 years to explain it. We still get so stupid questions about it: “Why do you have so much help when I have to clean my home myself.” It is difficult and we have not been very successful to get politicians and other people to understand that we are speaking of the basic things. We are speaking of the possibility of going to the toilet when you need and not when the social worker have time to come to your home and help you got to the toilet.
We have had some success. In 1987 we had a reform of the organisation of services for disabled people in Finland. We got a new legislation on services to disabled people. We got some basic changes and some basic prize for services to severely disabled people. That was a break in Finland from the so called Nordic social welfare model. For those who are not from the Nordic countries, the Nordic welfare model ensures that there is always a professor who knows what you need and make a decision and you do not even have the right to appeal that decision of the social welfare institution. That was changed but the law was quite weak. We have been fighting 20 years to get a new law. During the last two years we have concentrated [our efforts]. A new approach in Finland is that, we in Threshold and some other organisations try to get alliances with other organisations, even traditional organisations.
We want to bend the trend together and organise a campaign about personal assistance and we have been quite successful on this. I just checked my emails before coming here and I had gotten a report that the parliament’s social committee has approved the new law. In a few weeks it will come up in the plenary session. That means that next year in September we will have a right to personal assistance services. That is a big breakthrough. It does not solve all problems but by calculation we have solved the problem of 10.000 severely disabled people in Finland. The municipalities have to do this. They can not say that they have no money. This process was very interesting because we had meetings with the minister five times and talked about the possibilities. We also had a lot of possibilities to influence the text of the law. It is the first time in Finland for this kind of approach. In fact, we joined together with the Minister of social services against the Federation of municipalities. That was great because the Federation of municipalities say it is too expensive to keep us alive.
Other milestones are for example that we got a new constitution in the 90’s and we have antidiscrimination laws so it is not legal to discriminate disabled people any more. But this will have a slow effect in Finland because it is still so difficult to get it implemented.
I will say a few words about international cooperation as this has been a very important element in Threshold during the years. It was very important for me. When I was a young guy I met Judy. That was great. We were at a Red Cross youth camp in Norway. Viva Norway!, because that was very important for me. Then maybe one or two years later I made a visit to the US: I was in Berkeley. I met Judy, I do not remember where and I was living with your parents in Brooklyn. It was very eye-opening for what we did in Finland. Because of the negative atmosphere it was very good to see that we were doing the same things that others do, that we were right. Those people in the US are doing this so we must be right. It was very empowering. This is important for our movement. We should organise so that young people in our movement can visit other countries, maybe organise a systematic exchange program so that young people will stay in different centres and work there two months, three months or four months and live together, learn and get inspiration. That is really something we have neglected. Something we have not done enough of.
The other international point is that we widen our activities in developing countries, for instance in Zambia. We find some organisations and we realise that the problems are quite similar. Except for poverty, that is a difference. We are fighting for a place in our societies. Are we part of the society or are we not part of the society? That is a basic struggle for Threshold. About one third of our activities and annual budget are done within different kinds of co-operations in developing countries. It is really important also to give possibilities to people in other countries to see what we are doing, give our experience and also listen to their experience, compare and give encouragement. Disabled people in developing countries feel so isolated. They feel that they are left isolated in their own country because their own governments do not care about them. Their own societies do not care about them. When they see that there are some friends who care it is really empowering. It is also a duty for us who are living in the rich countries to get our governments to finance this. That is absolutely what we have to do more in the future. I really challenge you all in the Independent Living movement to go to the south. The good thing is that it is warm. It is very convenient because you are not freezing in Africa most of the time. So you get something back.
I have to tell you something outside my paper. Some years ago we were in Ethiopia Judy and I and there is a John F Kennedy library in the University of Addis Abeba. What had they done? They had taken the ramp away because it was so ugly so disabled students could not go to the library. Because of a Threshold co-operation with an organisation, I went back this fall and they had rebuilt it. There is also other examples that this reminds me of. I was in Sarajevo after the Bosnian war and I saw that the Sarajevo library that, had a long history, was destroyed during the war. It was rebuilt. Also the steps were rebuilt, no elevator. I thought: why do this? With the same money previously you could organise an elevator there. It is important that we in the global community take care about these issues. We should stop financing discriminating activities. The World Bank was financing 10.000 schools in Honduras without ramps. That was before Judy. After Judy they do not build schools anymore. No that was a joke.
I have to say that the global world is really complicated and difficult. The best time internationally was when Judy was working in the World Bank and I was chairing a small task force there. We were trying to push the World Bank and other international bodies to include disability. The resistance is very strong. There are some nice people who want to do good things but the general atmosphere is that disability is a rotten issue, it is you fault that you are disabled and we do not want to see you here. A little is changing but only a little because it has been very difficult to get them to understand that we are people like all others and that we should be taken into consideration like all the other people, not isolated or marginalised. That easily happens when like in education: OK we solve the problem with education first and then if we have more money we solve the problem with disabled people’s education. It should be solved at the same time. That is an interesting challenge for the future
[edited transcript from speech]