25 years of Independent Living in Sweden
Panel: Independent Living abroad - global perspectives,
speech by Tomas Lagerwall 08.11.28
First of all I would like to congratulate the Independent Living movement in Sweden on its 25 year anniversary. I do that in a personal capacity and also as a messenger from the organisation I just left, RI, Rehabilitation International. Sometimes we also call ourselves Rights and Inclusion to underline where we stand today in the convention. RI was founded 86 years ago. The State Secretary said this is still a young movement. RI has a couple of more years to its existence.This is my first presentation in Sweden, since I came back a few weeks ago, after living seven and a half years in the United States as the Secretary General of RI. “Disability does not mean inability”, is our slogan. I really like this and it will be my starting point. My slideshow is prepared a little bit from my international perspective and experience and also to some extent from the perspective of the United States where I have been living for some time.
This picture is from the Access Living Centre in Chicago which I had the pleasure of visiting two months ago. It is one of the larger Independent Living centres in the United States. It was a very interesting experience. This building that, you see in the picture, is a very modern building which was opened last year. The cost was about 18.000.000$ and it was all fundraised by the Independent Living movement in Chicago which I think is very impressive. It shows a bit of the strength of the Independent Living movement in the States. My other reflection is that an Independent Living centre in the United States works with a much broader scope than what we hear that the Independent Living movement in Sweden does. For example, you can go to this centre and say: I would like to buy an apartment. How can I get the necessary funding to buy this apartment? Or if I am a Latino immigrant with a disability and am discriminated against or do not get a job: How can I get counselling? This scope is much broader than it normally is in Sweden. Here a person would have to go to different institutions, different government settings. In Sweden I think it can be quite complicated to find the support you can get in one place in the United States.
Another thing that, has been mentioned today, is that, some of the strength of the disability movement, the Independent Living movement in the United States is that, you can sue someone if you are being discriminated against which is not yet so easy in Sweden and I would say in most other countries. Some Anglo-Saxon countries have similar opportunities, but this is one of the big differences. Media was mentioned here as well. If you watch television in the United States, a soap-opera or something else, you will often find a person with disability in the program, which is still rare in Sweden. Those are some observations I have done returning here.
We also mentioned public transportation. It is true that public transportation is more accessible in the US than for example in Sweden. On the other hand let me share this example with you: A friend of mine with three children went onto a bus in New York. Two of the children were toddlers so she had to carry them. Nobody helped her. The driver did not do anything. She had a struggle coming onboard those high level buses. In the meantime the bus stopped for a person with a disability who wanted to go aboard in the middle between two bus-stops. The bus stopped. The elevator came out and he came onboard. He was also helped off. Excellent service, we like that, but the model being used here and in other countries is accessible for all. The low floor buses here, and those in Helsinki which are even better, are a benefit to very many people, not only wheelchair users. I think Universal Design has its advantage. I am so glad that Judy talked so much about the convention. I thought it was missing in the discussions today, though it was mentioned here and there. I think this is an enormous opportunity for us which I will come back to.
The National Centre for Independent Living in the United States is a called NCIL. It is an umbrella organisation for all Independent Living organisations in the United States. Their motto is interesting: “Not just responding to change but leading it”. I think that is something we could learn more from. NCIL and other organisations have been very instrumental in a variety of important political aspects in the US society.
I think the Convention on the rights for Persons with Disabilities is a milestone and it is a real challenge for us how to use it. As Judy said, the disability movement and the civil society participated heavily in all the meetings. We would never have had a convention like this if there had not been a strong participation from the civil society and particularly from the disability community. A few words on where we stand today: We have the signing of the convention, so far 136 countries have signed the convention and 79 the optional protocol. When governments sign a convention they commit themselves to later ratify this. They also pledge not to work against the convention which is important. The important step is, however, when you ratify the convention. As the State Secretary said, it means that all legislation have to comply with the convention’s demands and ensure that persons with disabilities are not discriminated against. The ratification is completed when your documents have been deposited at the United Nations in New York. So far 41 countries have ratified the convention and 25 the optional protocol.
The optional protocol is an important instrument. It gives the citizen the right to turn to the experts in the Committee on the Rights of Persons with Disabilities if they feel that their government does not comply with the demands in the convention. If, persons with disabilities in Sweden feel that they have been discriminated against and if they have exhausted all legal options in Sweden, they can turn to this expert committee. Therefore, it is very important for us to launch a campaign, not only for ratification of the convention, but also for the optional protocol. As I understand it the Swedish government has the intention of ratifying both instruments next year. Sweden has been participating very actively in the negotiations but as a member of the European Union. This has its limitations. Whenever there was an intervention by the European Union Sweden had to fight 25 and later 27 other countries to get its opinion heard. Sweden signed the convention on March 30 2007. The parliament decided recently, on November 13, that Sweden shall ratify the convention. As I understand, that will happen next year.
RI, Rehabilitation International, the organisation I have been happy to work with for seven and a half years in New York, has about a thousand members in a hundred countries. It is a meeting point for consumer groups, researchers, service providers, professionals and others. It is open for people with all types of disabilities. It is cross-disability and cross-disciplinary which I think is unique in one sense. Anne Hawker of New Zealand is the President Chairperson and Venus Ilagan is the Secretary General and my successor. I am so happy that this organisation is now lead by two women with disabilities. This is an example of RI’s membership from Honduras which I think has implications on Independent Living. This group will never call themselves an Independent Living movement but they are doing vocational training, counselling and correctional assistive technology. All the people on the picture have different types of disabilities. People who work at this organisation, called Furil, all have disabilities and most people on the board have a disability. They really try to be an advocacy group in their country.
I would like to touch on an issue which some people might find a bit controversial, the relationship between Independent Living and Community Based Rehabilitation, CBR. If, you live in a developing country or in a poor country, you have to fight for your survival, to get your bread every day. Therefore work is so important. You often depend on your family or your community to a great extent. Some people in countries that I have been to say: I do not want to be independent. I want to be with my family. I want to be with my community. They feel that the term independent is kind of a threat to their lifestyle. That is an interesting reflection. By the way, when I visited the centre in Chicago, one of the most common questions they get from visitors is: Where do the people live? They come to this fancy building and, still today at 2008 in the United States, they think it is a house where people with disabilities live. It was a fascinating comment. I never expected to hear that. New guidelines for CBR are being developed where such issues as empowerment and self-determination are being developed. I do not see a major difference between CBR and Independent Living today. I think the two concepts are become much closer than they were many years ago. Still we have a lot to learn.
Let me point out that the photo I have chosen here is an example of what many people with disabilities are facing today. Many will work for low wages, no rights or very limited rights, long working hours doing things that they do not earn a lot of money from. The blind lady here is weaving baskets which I think is a very common profession for blind people in many parts of the world. When I visited this centre and other centres, this happened to be in Vietnam, I asked them if, this lady could not be trained in computer management or computer technology, instead of doing this, because we know that the competition is so hard and you earn so little from those very traditional jobs.
One and a quarter billion people in the world live on less than 1$ per day. Another two billion people live on less than 2$ per day, which means that half the world’s population live on less than 2$ per day. I think this is an enormous challenge for us both for the Independent Living movement, for people working with CBR and perhaps even more so for the convention. Many countries from the south are today signing and ratifying the convention. How are they going to implement it? It is an enormous challenge. I think it is the responsibility not only for their government but also for all of us sitting here.
The State Secretary, this morning, talked about the financial crisis in the world which is a real problem for us. If you listen to politicians especially in the present government in the United States, they will probably say that terrorism is the major threat at this moment. I belong to those who think that the environment is a major concern and threat to us all. I could have chosen pictures of the melting Greenland but I have not. I have chosen two pictures, one of an old aeroplane and one of a very new aeroplane, because if you make an analysis of your lifestyle, which many people do, to find out about your negative contribution to the environment, for me personally, it is all my flying. If you fly more than 10-20 hours per year you are on the bad side, which my children often point out.
I lived seven and a half years in the United States without a car. I try to recycle. I try to buy environmental friendly food. For example, I am drinking a glass of tap water you can do that instead of a bottle of Ramlösa, a bottle which has to be transported from far away. It has impact on the environment. You can have a Swedish apple instead of importing from far away. Oranges are a bit difficult. You can have an environmental friendly banana. We who work in the disability community need to think more about the environment and I think it is a challenge for the Independent Living movement and for all of us. If we do not we are heading for a disaster and people are going to say: We can not afford to spend so much on disability. We have to save because the glaciers are melting and it will be such an enormous environmental disaster. There are many things we can do, for example more accessible public transportation thereby reducing special solutions, use environmental friendly materials, recycle and use more energy compliant technology.
This picture is of a friend of mine. Her name is Åse Rambrink. I think some of you have met her and know her. She would have loved to be here and asked if I could convey a message, which I will try to do: “I have difficulties walking, therefore use a wheelchair. I can live with that. I can not use my hands or feet but I can live with that. I have a hearing impairment and I can live with that. But I can never accept that I can not speak, or rather that people do not understand when I speak or even worse not listen to me. I am an outsider. I am outside the intellectual community and the friendship in the community. I feel like I am in a glass igloo.”
Åse also said to me recently when I interviewed her: “I lived in a unit for housing with services and then I came across STIL in 1997. It was really important for me. I remember walking at Djurgården, a central park area in Stockholm, and I wanted to have an ice-cream. First of all, nobody would understand me if I ordered ice-cream and secondly, I could not hold it myself. So I looked at the ice-cream shop and I could not have my ice-cream.” This is an experience I think many of you have shared.
IDA, International Disability Alliance is a global alliance of the world organisations of different disabilities and some regional organisations. IDA played a fundamental role in the negotiations toward a convention and I am sure that IDA will be a major actor in implementing the convention which I think is a really important step. RI, the organisations I have just left, is still in charge of the secretariat for IDA and I think we should appreciate the 1.000.000$ grant from SIDA, Swedish International Development Agency to support IDA in its work. IDA has set up an IDA COPE forum which is a network for everybody interested in disability matters.
In this photo you see the IDA group meeting with the director of WHO, Margaret Chan and her staff. IDA works not only with the convention but also much broader, with UN agencies and others including the World Bank, to ensure that disability aspects are not forgotten. The implementing of disability rights are being taken care of.
Finally, I would like again to congratulate STIL and the organisers of this meeting and say to all of us: Do not just respond to change. Try to lead it. STIL of 25 years is an example we can learn from. You have taken a lead. You have not just responded. The big challenge now is with the convention and just ahead of us.
[edited transcript of speech]