Independent Living movement’s 25 years of existence in Sweden 2008 - Documentation



Kerstin Nilsson, vice chair person of STIL welcomes the guests. Opening speeches from Ulrik Lindgren, political advisor at the ministry of social affairs and Bengt Westerberg, chair person for the Swedish Red Cross and former minister of social affairs. Adolf Ratzka presents Independent Living.

A warm welcome from STIL

I am honoured to welcome you to this conference to celebrate the Independent Living movement’s 25 years of existence here in Sweden. During these two days we should above all learn from each other, from our different experiences of Independent Living and how we as persons with different disabilities handle the challenges we meet on a daily basis.
Kerstin Nilsson, vice chairperson STIL

Message from the Ministry of Social Affairs

Two years remain before the goal of an accessible Sweden is supposed to be fulfilled. Ulrik Lindgren describes the most important issues for the current government. The work to fulfil the promise of a society for all 2010 made in the national action plan on disability politics is ongoing. However, the goal is still far away. We get a report of the situation and planned activities. Another important area is individual support where the Paliamentary committee on support and service has delivered its final report. This is out on remittal at the moment. The purpose is to maintain the right to personal assistance but increase control over the system. The government is also spending money on issues to decrease the unemployment rate among persons with disabilities.
Ulrik Lindgren, political expert, Ministry of Social Affairs 
full ext (ENG)

Presentation of Bengt Westerberg

Exactly 25 years ago, here in Stockholm, I organized the first conference on Independent Living in the Nordic countries with among others Judy Heumann from the U.S. as speaker – Judy is also with us today. The conference in 1983 became the starting point of the Swedish Independent Living movement. This movement’s greatest achievement so far was to initiate the establishment of Assistance Allowance, from the Swedish Social Insurance Agency, through the STIL program of personal assistance. We have to be perfectly aware of the fact that Assistance Allowance never would have been established without the then minister of social affairs, Bengt Westerberg’s personal commitment. During the early 90s Sweden was going through a periods of deep recession at the same time as the admission requirement of the EU demanded cuts in the state expenses. But Bengt Westerberg stood strong and the reform became reality. The conference today is about Independent Living, but it shall also honor Bengt Westerberg.
 Adolf Ratzka, Director Independent Living Institute

Speech by Bengt Westerberg

It is 22 years since Bengt Westerberg met the ideas of Independent Living for the first time. The inspiration, led to a parliamentary speech where he expressed his wish, to realise a right to personal assistance for all persons with extensive disabilities. Later, during his time as minister for social affairs he got the opportunity to make this a reality. The legal reform would be more costly than calculated due to the fact that municipal home care services had not satisfactorily fulfilled the needs. Personal assistance is a revolution but it is not enough to singularly create an inclusive citizenship. Accessibility is also a requirement.
Bengt Westerberg, chair of Swedish Red Cross and former Minister of Social Affairs

Adol Ratzka introduces the Swedish Independent Living movement

The Swedish Independent Living movement is the exception from the rule. It has not waited for the actions of politicians or civil servants but made welfare politics through its own strength. The members see themselves as citizens like others and demand equality and freedom of choice. This is a freedom of choice not only executed through the ballot but also in everyday life. There is still a lot to achieve. The principle of direct payments can be applied to many more areas in society.
Adolf Ratzka, Director Independent Living Institute

Models, milestones and achievements by the Swedish Independent Living organisations

The three big Independent Living cooperatives – STIL, GIL och JAG – and the think tank Independent Living Institute get the possibility to describe their work. They have all partially developed from the model presented at the Stockholm conference in December 1983.
Speakers: Susanne Berg, Anders Westgerd, Cecilia Blanck och Adolf Ratzka

The Stockholm Cooperative for Independent Living

STIL is the oldest of the organisations within the IL-movement in Sweden. Its working model is built on a combination of Independent Living’s two sides – the personal attitude and the political movement. During the early years personal development is at the centre of activities and STIL focus on peer support. The members are given an opportunity to grow out of seeing themselves as victims and into an active citizenship. Today the organising of personal assistance is at the forefront of STIL’s activities. However the organisation still functions as a role model. Members are provided with support and training to be capable bosses for their assistants and become role models in this capacity. The organisation also aims to be a role model for other organisers of assistance. A large part of its employees are persons with disabilities.
Susanne Berg, MA Disability Studies, former chair DHR Stockholm and STIL-member

The Gothenburg Cooperative for Independent Living.

GIL has by and large gone through the same development as STIL. However, Gothenburg’s local political situation meant that it was harder to get assistance through contract with the municipality at the beginning. Among other things, Gothenburg decided to split the local authority into district committees at the time GIL was formed. The number of service users increased as soon as the legal right to personal assistance was enacted in 1994. Recently GIL:s staff has undergone a rejuvenation. The organisation also seeks to attract new and younger members. At the moment GIL run a project aiming at opening up the housing market.
Anders Westgerd, executive of GIL

The JAG Association – Equality, Assistance and Community
[Jämlikhet , Assistans och Gemenskap]

JAG organises persons with extensive and complicated functional disabilities. At its start 1992 the aim of the association was purely political. The organisation strove to assure that the proposed legal reform had a design so that the members would be included in the right to personal assistance. When the reform was enacted it was a logical step for JAG to also become an assistance cooperative. JAG’s starting point is that everybody can execute self-determination. Everybody is capable of expressing likes and dislikes to somebody who knows them well. JAG’s model for self-determination is built around the legal guardian supporting the member’s decisions. The member also has a service guarantee who has the responsibility for the personal assistance. The association has developed models of training and services to support its model of self-determination.
Cecilia Blanck, vice executive of JAG
full text (ENG)

Independent Living Institute.

ILI was started to pursue change in areas STIL was not capable to cover. The aim is to introduce Independent Living philosophy in other areas of society by taking initiative and formulate solutions. ILI has chosen to act for its own ideas instead of reacting to the proposals of the political power. As a rule, the model involves formulating a proposal, securing funding for this and carry out a pilot project. Solutions from an Independent Living perspective are as a rule found outside the existing structures. ILI is carrying out projects within Sweden as well as abroad cooperating with a multitude of partners. ILI’s projects deals with exchange of experience and information as well as formulating and testing IL-solutions. The activities are mainly project funded. The future for the Institute is at the moment insecure.
Adolf Ratzka, Director of Institute on Independent Living

Future challenges

Before closing of the session Susanne Berg, in her role as moderator, requested the panel to answer the question: What is the main challenge for the Independent Living movement in the future? On behalf of STIL Emma Johansson, member of STIL's board, answered.
full text (ENG)

Independent Living's role in Sweden

The background to the resistance against Independent Living’s philosophy, among the established disability organisation and why, in spite of this, it succeeds to become a part of the Swedish welfare state. What makes Independent Living so alien and raise such opposition in Sweden? What has been its influence on Swedish welfare policy?
Speakers: Birgitta Andersson, Lars Lindberg, Susanne Berg and Peter Brusén.

The role of Independent Living and the established disability movement

During the 1960’s and 1970’s the big institutions are closed and the welfare system is developed. Accessible housing is starting to be built and it is possible for persons with extensive mobility impairments to get an education. However, the possibility of receiving necessary service is lacking. DHR’s struggle for housing with services should be seen in this historical light. It was a solution which to huge disappointment was going to retain much of the institutional way of thinking. When STIL introduced personal assistance it was too foreign for many. Within the movement there is also doubt that it can be implemented in every municipality. We went on the defensive and this resulted in conflict. However, eventually we came around and changed our opinion.
Birgitta Andersson, former chair of DHR
full text (ENG)          biographical notes

The bumblebee is flying – straighter

Swedish welfare politics is path-dependent, i.e. political decisions are taken in line with former political decisions. The organisations within the non-profit sector also have an ability to assimilate new ideas. These factors are indicators against the success and survival of the Independent Living movement. Still IL has managed to survive as a movement. There are several reasons for this. One of these is the growing critique during the 1980’s of the public sector’s monopoly and the lack of freedom of choice for the individual citizen. Of huge importance was also Bengt Westerberg’s way of making personal assistance into a symbolic issue, of making disability politics into a symbol for general politics. Today, the discourse of the Independent Living movement has been assimilated while the proactive working method has not had lasting impact, therefore, the movement is loosing in importance.
Lars Lindberg, currently on leave of absence from Ministry of Social Affairs
full text (ENG)          biographical notes

A contradiction with the dominant view

The Swedish welfare state is characterised by a culture of negotiation. At the foundation is a sense of solidarity. However, this does not always result in individual self-determination. The collective influence through the representation of interest organisations is expected to guarantee influence also on an individual level. Equality within Swedish democracy is viewed as end result. From an Independent Living perspective equality is measured in terms of equal opportunities and an individual right to shape the end results. The Swedish environmental-relative model of disability is basically a distributive tool for pragmatic political solutions. Therefore, the fact that a solution like personal assistance has been possible within the Swedish welfare system does not necessarily indicate a break-through for Independent Living ideology in other areas.
Susanne Berg, MA Disability Studies, former chair DHR Stockholm and STIL-member
full text (ENG)          biographical notes

Independent Living gives power to words

Two revolutions involving persons with disabilities have taken place within the Swedish welfare system: the closure of institutions and the introduction of personal assistance. An inquiry, of the National Board of Health and Welfare estimating the actual costs of assistance, show that, the reform is not as costly as is alleged. It is important to describe the reasons behind the costs. The Independent Living movement have done and do important work in this area. IL also does an excellent work in describing how society disables individuals. Both accessibility and self-determination is necessary to achieve full participation. However, the most important aspect of Independent Living’s work is that it gives power to words. What we say we are going to do, we have to do. The work of Independent Living decreases the gap between words and actions.
Peter Brusén, Division of disability National Board of Welfare
full text (ENG)

Independent Living abroad

Independent Living abroad – country examples

In Sweden, Independent Living has had to concentrate its resources resulting in the focus on personal assistance. In other countries the movement has succeeded in influencing other areas in society and its members occupies important positions. Political and personal powers are both Independent Living goals.
Speakers: Bente Skansgård (NOR), John Evans (UK), Horst Frehe (GER) och Marilyn golden (USA)

Independent Living in Norway – ULOBA

The Norwegian Independent Living movement is relatively small and focuses on personal assistance as the Swedish movement. During the speech a slide-show with a speaker voice is shown. This creates a time line and a connection between the American civil rights movement in the 1950’s, the Swedish success of legal rights to personal assistance in 1994 and the growth of the Norwegian Independent Living movement. Today, ULOBA is a cooperative with members all over the country. It has learnt a lot from, both the American and Swedish Independent Living movement and in its turn supply knowledge and experience to other countries. ULOBA has kept the focus on ’peer support’ during the years, therefore they feel politically strong today.
Bente Skansgård, (Norway), chair of ENIL and founder of Uloba,
Board Member Independent Living Institute

Independent Living in the UK - Developments, Accomplishments and
Impact on Government Social Policy and Legislation

The Independent Living movement in UK of today has its roots in the activism of the 1970’s. The first centres on Independent Living were started in Derbyshire and Hampshire, 1984. The struggle for direct payment for personal assistance first resulted in the ‘Independent Living Fund’, which gave subsidies to persons with extensive need for services, and eventually in the Direct Payment Act 1997.  The British Independent Living movement also manages to secure an anti-discrimination legislation after fourteen years of struggle. The last couple of years have been very successful. Authorities and political entities often use persons from within the Independent Living movement when developing policies and strategies. These key persons are moulding the politics of tomorrow.
John Evans, (United Kingdom), OBE and former chair of ENIL

Development of the Independent Living movement in Germany

During the 1960’s disabled youths in Germany become more radical and 1978 the ‘Krüppelbewegung’, the cripple movement are formed to work against the ruling power hierarchy. Its working method was often direct action. Eventually groups band together in a coalition with two main directions. One is focusing on individual prerequisites f.ex. personal assistance and another on political representation. Independent Living is introduced at a conference in Munich 1982 and the first CIL opens in Bremen eight years later. The German movement has done a concentrated effort to achieve anti.-discrimination legislation. Since 2002 laws prohibiting discrimination also exist on both federal and state levels.
 Horst Frehe (Germany), judge, MP in Bremen, former chair of ENIL
and co-founder of the German Cripple movement

Disability Rights Education and Defense Fund (DREDF)

DREDF is Americas leading centre for disability rights law and policy development. The centre draft policy and legislation, train individuals, give technical and legal assistance. From the start DREDF was part of the Berkeley CIL. Today there exist just below 500 centres for Independent Living in the US. Accessibility issues are regulated through two different legal systems. Federal civil rights legislation prohibits discrimination on account of inaccessibility and building acts on state regulate societal norms for access to buildings and constructions. The American disability rights movement view persons with disabilities as part of a common class. The common denominator is discrimination. Anti-discrimination legislation is just one of several tools to fights this.
Marilyn Golden (USA), Disability Rights Education and Defense Fund

Independent Living abroad
– global perspectives

After example of Independent Living movements from different countries’ perspective it is time to listen to the international movement to enter the stage. Independent Living is a part of the international disability rights movement. This continues to grow increasingly stronger. Joint efforts have this year managed to guarantee its greatest achievement so far – the enactment of the UN convention on human rights for persons with disabilities.
Speakers: Judith Heumann (USA), Tomas Lagerwall (SWE) and Kalle Könkkölä (FIN)

A global perspective – to refuse to take ”No”

The refusal to take ‘No’ for an answer, the struggle for control over heir lives and a firm belief in their capacity is what the Independent Living movement, self-help groups and others have in common. During the last four or five decades the disability rights movement have spread internationally to also include persons with disabilities in developing countries. The UN convention is a symbol for the success of the movement. Historical lessons are the importance of education, to work across age differences and cross-disability, as well as multitasking. It is also important to draft the movements own proposals. Foreign aid must always include persons with disabilities. 
Judith E Heumann (USA), head Disability Services Washington DC, former first Advisor on Disability and Development, World Bank, former Assistant Secretary, Office of Special Education and Rehabilitative Services in the Clinton Administration

A global perspective – the convention is a challenge

Rehabilitation International, RI is an international organisation with approximately one thousand members in a hundred countries.   It is a meeting point for consumers, researchers, professionals and service providers. Nowadays it is led by two women with disabilities. CBR, ‘Community Based Rehabilitation’ is sometimes viewed as a controversial issue from an Independent Living perspective. However, one can claim that the concepts nowadays are closer. In developing countries CBR is important since it is connected to work. The concept of ‘independent’ can here be perceived as negative, as a threat to an existing life style where one live dependent on family and community. In a world where 2 billion people live on less than 2US$ per day the realisation of the goals in the UN convention has to be a joint responsibility.
Tomas Lagerwall (SWE), former Secretary General, Rehabilitation International

A global perspective – a Threshold to the future

The organisation Threshold was started in 1973 by students with disabilities at Helsinki University. At that time persons with extensive disabilities were viewed as objects even by the established disability organisations. The members of Threshold see disability as a political issue. Later, when the Independent Living movement was introduced in Finland it was evident that Threshold had significant similarities with this. The struggle for personal assistance has taken a long time, however, in the fall of 2009 a legal right to direct payment is going to be enacted. One third of the organisation’s budget as well as activities are directed to cooperation with organisations in the developing world. Future challenges include making sure foreign aid do not exclude persons with disabilities.
Kalle Könkkölä (Finland), chair and director Threshold, former MP for the Finnish Green Party, former chair of DPI, Board Member Independent Living Institute

 Independent Living Movements in Asia: Its Achievements and Future

Shoji Nakanisi (Japan) DPI chair for Asia and Pacific and chair of Japanese Council for Independent Living was  unfortunately unable to attend. Below is link to his intended speech.

Closing remarks - reflections on the day

Henrik Berggren historian and journalist at Dagens Nyheter

Closing speech

Hadar Cars, deputy mayor of the City of Stockholm