Oct 27,1999 International symposium
Activities and Issues of International Cooperation in the Disability Field
Jaan Kaur Organizing Secretary, Stockholm Branch, DHR
Ladies and Gentlemen!
Dear sisters and brothers with disabilities!
I am very honoured to sit here and address this important Symposium!
My name is Jaan Kaur. This is not a common Swedish name. I am the oldest child of an Estonian refugee who came to Sweden in a small boat from the other side of the Baltic Sea during World War II. My mother was Swedish and I am the first matchless result of their meeting and marriage! I am employed by the local branch of Stockholm of the Swedish Federation of Disabled Persons - DHR.
First I am going to give you a very short introduction to my country, Sweden. I think it is important that you know a little bit about a country so different from your own. Then I am going to introduce you to who we are, we the persons they in Tanzania in Africa use to call “PWD: s”, Persons with Disability.
I am also going to tell you something about my organisation, our history and what we are doing in Sweden and on the international arena. I will also tell you about SHIA, Svenska Handikapporganisationers Internationella Bist?ndsf?rening. The abbreviation SHIA stands for “Solidarity, Humanity, International Aid”.
Aboutsweden.
Who we are and our demands?
What are our demands?
Swedish Federation of Disabled Persons - DHR
SHIA
Where do we get money?
Who are the SHIA member organisations?
Sweden is a country on the north side of the globe. It is situated in the north of Europe. Sweden is actually quite big by European standards. My country covers 450.000 sqkms and contains about 9 million inhabitants (Just like Osaka I think). The size of Japan is about 370.000 sqkms. Sweden is actually about twice the size of the United Kingdom. As of 1994 Sweden is a part of the European Union.
The capital of Sweden is called Stockholm. The town celebrated its 700th anniversary in 1953. Now we are about 800.000 people who live within the boundaries of the city, and about 1,5 million in Greater Stockholm. (Like Fukuoka I think).
We have had peace for a long time. In 1814 we signed our last peace-treaty and we have not been invaded by hostile troops since 1809, when we lost the eastern half of the country, Finland, to the Russians. In the beginning of this century Sweden was one of the poorest countries in Europe. Now it is one of the richest in the world.
Sweden is a democracy with a king. We have elections every fourth year. Since the last elections we have a minority government of Social democrats (“labour”) supported by the Left Party and the Environmental Party, the Greens.
For almost all the time since 1932 we have had a Social democratic government. During this period Sweden was transformed into a society where the government or the municipality took a big responsibility for the well-being of the people. Maybe one can call that “collective solidarity”?
Who are we, the Persons with disabilities? I think you can describe us in different ways according to what you want to achieve with the description. Some persons would tell you that there are a vast number of us with disabilities. About 500 million persons out of the six billion on Earth! Some would like to describe us as blind, visually impaired, mentally handicapped, deaf or with hearing impairments, with mobility difficulties or with medical handicaps like diabetes.
But I want to describe us in two other, different, ways. As you can see these Over Head-pictures are in Estonian. For the last three years I have spent some time in Estonia working together with an Estonian organisation of the Disabled in a training-programme for their officials and members. These pictures show our way of describing us.
That is a very simple question to answer. At least in Swedish:
“We do not ask for anything “extra” or any advantages - all that we ask for is the right to live and to work on the same conditions as every one else in our country”
Swedish Federation of Disabled Persons - DHR
DHR was founded in 1923 by students/pupils attending a vocational training centre for the disabled in Gothenburg, the second city of Sweden. We are an “of-organisation”. We are one of the oldest associations of disabled persons in Sweden. Nowadays we cover the whole of Sweden with local branches in every community and municipally in the country. We have about 30.000 members. We are organised in the typically Swedish way for Popular Movements, a national level, a county level and the local level = municipal or community level. On the local level we handle local issues: for instance accessibility, homehelp-services et cetera. On the county level say public and special transports (buses, underground, commuter trains), habilitation and rehabilitation, labour market et cetera. On the national level we are dealing with personal assistance, legislation and so forth. We are also members of international organisations like DPI, Disabled Peoples International, FIMITIC (a European organisation of Disabled persons) and NHF, the Nordic organisation of organisations of persons with mobility disabilities). DHR is also one of the leading organisations of SHIA.
SHIA is a non-governmental and non-profit association formed by Swedish organisations of disabled persons to support and co-operate with disabled persons and organisations of disabled persons in developing countries (mainly in the Southern Hemisphere) and transforming countries (mainly former Soviet republics and satellites in Europe). But also to influence other international and national organisations to improve their work in developing countries and to include persons with disabilities in their target groups.
SHIA was founded in 1981, the year the United Nations declared as the International Year of Disabled Persons. SHIA does not run any programmes or projects by itself, (except one programme in South Africa as a consultant for the Swedish government). SHIA is the executive body for programmes and projects initiated and supported by its member associations. The member associations formed SHIA as an expert agency in this kind of work to make our work and efforts more effective. The responsibilities of the member associations, the SHIA board, the office, the field staff and our partners abroad are specified in Project Agreements. The responsibility for the implementation of the programmes/projects always rests with our partner/s in the affected country.
SHIA aims for long-term actions. Development takes time. Especially when you are working together with the poorest of the poor in economic and educational terms.
The programmes supported by the member associations through SHIA can be divided into three main categories:
1. Supporting and strengthening organisations OF persons with disabilities
I guess you all know the difference between “of-“ and “for-“organisations? I am going to use the word “of-organisation” quite often, so just as a reminder I am going to try to describe the difference very briefly. An “of-organisation” is an organisation where we have the power and the leading positions. A “for-organisation” is an organisation created by others to support us, often on a charity basis and are often controlled by teachers, rehabilitation staff, relatives or friends of persons with disabilities. We can become members, but you can not be certain that it is the disabled themselves making the final decisions. A typical “of-organisation” is DPI.
2. Supporting habilitation/rehabilitation programmes
This work involves both traditional rehabilitation and local community based rehabilitation, CBR. In Sweden, and in Swedish, we make a difference between rehabilitation and habilitation. If rehabilitation means that you are trying to give a person back skills, skills lost in an accident or through illness, habilitation is to give very young persons skills they never have had.
This is a very slovenly definition. I just want to give you a small clue to help you understand our way of thinking in this matter. This is integration in the school systems for all children, but also special education. We also support teachers’ training.
To me personally this, the first category, - strengthening organisations of the disabled - is by far the most interesting and challenging task to be carried out! I am convinced that if you want to change society in a way to improve living conditions for persons with disabilities, you have to do it together with the persons affected. You will have to show confidence in them and their abilities. Otherwise it would not work! You can build beautiful castles made of sand, but they would not last when the rain comes…
To fulfill the first task is the hardest mission. And you have to bear that in mind in every thing you do in this field. This is what makes SHIA and its member associations’ work so unique.
SIDA, the governmental Swedish International Development Agency, is our principal funding source. SIDA covers 90 percent of the programme costs. The rest, 10 percent, has to be covered by the Swedish organisations themselves. DHR made a decision at the Congress in 1993 that 1 percent of the membership fees should be used for this purpose. It is also possible for members to contribute directly by sending money to a special bank account. We do not raise funds from the public!
The annual budget of SHIA is about SEK 35 million (Swedish kronor) or 4 million Euro (USD 4,2 millions).
The budget posts are in SEK:
South
Administration
2.800.000
Programmes (including contributions from member organisations)
18.700.000
Accessibility (handicap adjustments)
4.500.000
Information
2.500.000
Development of methods
2.300.000
“South” total:
30.800.000
Eastern Europe
Administration
370.000
Programmes (including contributions from member organisations)
2.947.000
Handicap adjustments
649.000
Information
170.000
Development of methods
33.000
Eastern Europe total:
4.169.000
GRAND TOTAL:
SEK 34.969.000
By “handicap adjustments” I mean costs to be covered for personal assistants, sign language interpreters, special hotels or transports, to make written materials readable for the blind et cetera.
Who are the SHIA member organisations?
DHR is one out of 19 members. I am not going to tell you who all the others are. But I would like to mention just two. “The Association of the Swedish Deaf-blind” is a very small organisation running a programme in Eastern Africa and another in Latin America. Another important organisation to mention is the “Swedish Association of the Visually Impaired”. They were the ones who started the work way back in the sixties, and they still run a lot of the programmes carried out through SHIA.
SHIA´s member organisations are active all around the world with different programmes and co-operations. In 1998 we were in 23 different countries.
Europe (In 1998 in Europe you can find us in)
Estonia：
1programme, category 1, supporting member organisation: DHR
Latvia ：
2 p, c 1, the Swedish Asthma and Allergy Association, RNj Swedish Association of Kidney Patients
Lithuania：
2p, c1, PSO the Swedish Psoriasis Association, FUB the Swedish National Society for Persons with Mental Handicap
Poland：
3p, c2x1+2, NHR the Swedish Association of Neurologically Disabled
Rumania：
1p, c3, FUB
Africa(In Africa in )
The Ivory Coast：
1p. c1, SRF
Ethiopia：
1p, c2, NHR
Gambia：
4p, c1, RBU, SRF, SDR, FUB
Ghana：
2p, c1-2-3, DHR, NHR, RBU, SDR, 2xSRF
Kenya：
7p, c1+3, FSDB, 3xSDR, 2xFUB, SRF
Tanzania and Zanzibar：
9p, SRF+DHR+SDR+HRF, SDR+HRF, FUB, SOR, 2xSRF, RTP, 2xDHR
Zambia：
1p, c1, SRF
Zimbabwe：
1p, c1, SRF
South Africa：
1p, c1, DHR+SDR+SRF
Latin America:
Peru：
1p, c1, FUB
Colombia：
1p, c3, FSDB
Nicaragua：
5p, c1+c3, RTP, 2xRSMH, SRF, SDR
Asia
Sri Lanka：
3 p, c1-2-3, SRF+FUB+SDR+DHR, FUB, US
India：
3 p, c 1-3, 2xFUB, SRF
Nepal：
3 p, c 1-2-3, 2xSDR, NHR
Thailand ：
2 p, c 1-3, HRF, SDR
Laos：
3 p, c 1-2-3, 2xHRF, HRF+SDR
Vietnam：
1p, c1-2-3, SRF
We also have some regional and global programmes.
As I understood from the invitation you are most interested to get information and views from what we are doing in Asia. I will tell you briefly about the programmes in Laos, Vietnam, Thailand, Nepal and India. Then I will tell you a little bit more about Sri Lanka and DHR.
Laos
In Laos the Swedish Association of Hard of Hearing, HRF, is running three different programmes. One is preventive hearing care through diagnosing and training of doctors and nurses. Basic surgical equipment has been bought and manuals have been printed. The Lao partner is the Ministry of Health. The other programme goes together with the same Ministry, the National Centre for Medical Rehabilitation/School for Deaf. It is about rehabilitation and education of hearing impaired and deaf children through better teacher-training, introduction of new methods and speech trainers (talpedagoger), parent counselling and the creating of more accessible rooms for education. The last programme is a project jointly with the Lao Disabled People’s Organisation. The goals are to strengthen the organisation, to improve the English as well as the Sign language among the officials and also to raise awareness among the general public about deafness and hearing impairment.
Vietnam
In Vietnam the Swedish Association of the Visually Impaired has a programme together with its Vietnamese sister organisation, Vietnam Blind Association. It is a CBR-programme with the goal to give visually impaired persons, mainly in the rural areas, access to education, rehabilitation and vocational training.
India
In India the Swedish National Association for Persons with Mentally Handicap together with the Indian organisation REACH are having information activities in order to change public attitudes towards children and young persons with disabilities. This programme ends this year and has been running for ten years. They also have a training programme for 300 parents.
The Swedish Association of the Visually Impaired is co-operating with All India Confederation of the Blind in order to give visually impaired persons in the rural areas access to education, rehabilitation and vocational training through CBR-activities. They are also trying to develop CBR methods suitable for the blind.
Nepal
In Nepal there are three programmes running.
The Swedish Association of Neurologically Disabled, together with Nepal Disabled Association (NDA), is trying to develop CBR activities in nine villages; intensify the work to develop NDA administrative strength; put special efforts in women’s groups and raising awareness about the situation of women. Sign language is also on the agenda.
Kathmandu Association of the Deaf and its Swedish sister organisation has started a sewing workshop for young deaf women.
The Swedish National Association of the Deaf is also supporting the Nepal National Federation of the Deaf and Hard of Hearing and a CBR programme.
Thailand
The Swedish Association of Hard of Hearing, together with the Ontological Centre, Bangkok Unit, Faculty of Medicine, Khon Kaen School for the Deaf failed in their mission to open a pre school for deaf children.
Sri Lanka
In Sri Lanka there are different programmes going on. For instance, the Association of Visually Impaired Youth (in Sweden known by the abbreviation "US") is co-operating with the Ratmalana School for the blind in a vocational guidance programme. The Swedish National Association for Persons with Mentally is building a home for 15 homeless mentally retarded women in Galle in southern Sri Lanka.
I shall now spend some time telling you about the programme I have been following for quite some time. The official name of the programme is nowadays "Project to supplement the National Policy on Rehabilitation, Welfare and Relief for Persons with Disabilities".
DHR took over an American project in November 1985 when an organisation called IHAP rapidly withdraw their support to a vocational training and job placement programme for the disabled in Sri Lanka. I really do not know what happened, why they stopped.
We took over the project, the office and the local staff and kept in running for about six months. During that time we planned for the future. It was important to us to involve the country's own organisations in the programme. We decided to give them a forum to meet and discuss with each other and the authorities. So we formed a project committee with representatives from affected Ministries, organisations, different centres and the head of the SHIA office. The Secretary to the Ministry of Social Services was appointed as chairperson. Now the programme has been running for 14 years and it has been very successful. But it is not the same programme today as it was back in the eighties! It has changed in many ways. As I said, DHR took over the programme and kept it going for several months with only local staff. During that time we recruited and trained a Scandinavian project leader to be sent to Colombo. By that time it was important for us to have a person that understood what we meant and that understood our "cultural background". Sri Lanka was, and still is, a country with severe internal conflicts. There is a civil war in the northern and in the eastern part of the island. The war brings a lot of victims on both sides. There was also a lot of disturbance in the south because of a singhala organisation called JVP. That was a hard time for the project, the situation affected us, but we managed to continue the work. I think it was in 1993 when the programme could look back and see that more than 1.000 persons with disabilities had been helped to get an employment in a country with a very small labour market. Especially women found jobs in different industries: in tea packing, candy making and textile industry.
Some years ago SHIA decided to have a national co-ordinator for Sri Lanka employed by the SHIA head office in Stockholm but placed in Colombo. They employed the project leader, a man from Sri Lanka, for that position. And I think that was what we in Swedish call a "lyckokast" or a "really lucky strike". We actually have almost the perfect man for that position, he only has one handicap - he has no disability. When SHIA was going to evaluate a similar programme in Tanzania we used our man in Colombo to do the evaluation. That also lead to further contacts between the two programmes. When our co-ordinator is going to retire we will try to employ a person with disability from Sri Lanka to be his successor.
Our official partner in Sri Lanka is the government trough the Ministry of Social Services. But also the Ministry of Education and Higher Education and the Western and Southern Provincial Councils.
What are the development objectives for 1999 and 2000? Improve the Socio-economic status of Persons with Disabilities in Sri Lanka in furtherance of the objectives of the United Nations World Programme of Action Concerning Persons with Disabilities, Standard Rules on the Equalisation of Opportunities for Persons with Disabilities and the Salamanca Statement on Education for All. Also to support the government of Sri Lanka in achieving the aims and objectives of the "Protection of the Rights of Persons with Disabilities Act, No 28 of 1996".
The project objectives are to "promote creation of a handicap friendly environment in order to accelerate the implementation of the National Policy on rehabilitation, welfare and relief of Persons with disabilities"; "strengthen the organisations of persons with disabilities to enable them to advocate for the disabled and create an environment suitable for them"; "to provide models for the political decision-making process for the attainment of equal opportunities" and finally, "to support the CBR programme in Sri Lanka".
How are we going to achieve all this, what are the programme activities?
The project committee contains representatives of different Ministries, the Department of Social services, the National Institute of Education, a Teachers' College, SHIA staff and organisations of and for persons with disabilities. There are also three sub-committees: One for "Inclusive Education", one for "Deaf Education" and one for "CBR".
Create awareness in the society on the situation of persons with disabilities and their rights and privileges. This is made in different ways, for example through commercials in Television and radio and advertisements in newspaper.
Strengthen organisations collaborating with SHIA in the promotion of the cause of Persons with Disabilities.
Support organisations and institutions, and others which are engaged in providing services to persons with disabilities.
Support authorities such as Ministry of Social Services, the National Council and the Secretariat (for the Disabled), Ministry of Education and Higher Education and other relevant Ministries, the Department of Social Services and Provincial Councils. This could be done in different ways as paying salaries for a person or to cover some costs for a seminar.
Consolidation of the Kalutara District Programme through collaboration with Kalutara District Rehabilitation Foundation. Kalutara is a district south of Colombo. The Foundation is a very interesting creation. They have an amount of money to be used. The board contains representatives from the authorities and of all persons with disabilities living in the district. All known persons with a disability are gathering to elect their representatives.
Continuation of the Galle District Community Based Resource Development programme with emphasis on Inclusive Education except deaf persons. Support the cause of the deaf through promotion of the use of sign language in the education of the deaf and strengthen organisation of the deaf collaborating with SHIA.
Promote the Association of Women with Disabilities to form District Organisations of Women with Disabilities starting with one in the district of Anuradhapura.
As you can see we are working very close to the authorities as well as with the organisations. We also keep a very low profile. We think that this will help us to make our programme sustainable and a part of the official Sri Lanka. And that the organisations and authorities will keep on with their discussions as equal partners when we finally withdraw our financially support.
Tack sa mycket for er uppmarksamhet!