Independent Living Institute

Independent Living Developments Around the World - Independent Living Institute Newsletter, June 2004

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Independent Living Developments Around the World

The Independent Living Movement continues to expand around the world and into the vocabulary of service providers and policymakers. For example, the United Nations' International Day of Disabled Persons, December 3, 2002, had "Independent Living and Sustainable Livelihoods" as its theme; in the European Union, the term is frequently used in calls for proposals and other official documents. The motto of the EU's European Year of People with Disabilities was "Nothing About Us Without Us," a slogan usually ascribed to Ed Roberts who is considered by many to have been the father of the IL Movement.

Disabled people working in the field are noticing that it is easier for service providers and policymakers to use a new term than to fully grasp its contents. The discrepancy is painfully recognized, for example, by the inmates of residential institutions that proclaim to be "Residences for Independent Living" but do not materially differ in their exclusionary and stigmatizing function from institutions that carry more old-fashioned but honest names.

Even within our movement our definitions may not always overlap as we emphasize different aspects in our interpretations of the term depending on our country, political persuasion, extent of perceived discrimination, age and personal experience.

For this edition of our newsletter, we compiled a series of articles from around the world to reflect the growing diversity, shifting focus and needs of the individuals, groups and organizations that consider themselves a part of the movement. We may differ in emphasis, but some essentials remain: the demand for the individual's self-determination and self-representation, respect for life and diversity, peer support and the belief in personal growth for all.

Adolf Ratzka,PhD, Director,
Independent Living Institute.


Articles About Independent Living Developments Around the World

1st European Congress on Independent Living. 2003-04-26. "Tenerife Declaration - Promote Independent Living - End Discrimination against Disabled People." From the 1st European Congress on Independent Living, Tenerife April 24-26, 2003. Internet publication URLs: and

The Tenerife Declaration, signed in Tenerife in April 2003, is a policy document agreed upon by four hundred participants from many European countries and calls for the European Union to implement the policies outlined in the Declaration. The Declaration calls for full and equal participation of disabled people in society through recognizing Independent Living as a fundamental right of all disabled people and implementing policies to facilitate Independent Living.

Belli, Raffaello. 2003-03. "Independent Living and some Italian Experiences." Internet publication URL:

Presented at the European Network on Independent Living (ENIL) conference in Southampton, England, 7-9 March 2003.

Berg, Susanne. 2003-05-20. "Personal Assistance in Sweden." Plenary presentation at: Personal Assistance in Practice - A Conference Organised by the Swiss Association for Social Policy (Persönliche Assistenz in der Praxis - Eine Informationstagung der Schweizerischen Vereinigung für Sozialpolitik), Hotel Bern, Bern, Switzerland. Internet publication URL:

From the perspective of a personal assistance user, the author describes the background and development of the legislation in Sweden dealing with personal assistance through direct payment. The power issues surrounding establishment of the Stockholm Independent Living Cooperative (STIL) are also addressed.

Bollard, Joe. 2003-09. "ENIL's Strasbourg Freedom Drive 2003." Transcript of the radio programme, 29:49 minutes, RealAudio format, 4.6 MB (download or listen on-
line). Internet publication URLs : (download), (listen on-line), and

In September 2003, ninety assistance users from ENIL, the European Independent Living Movement, converged on the European Parliament in Strasbourg to present their key demands (see ) for the inclusion of people, who need personal assistance, in mainstream society. Joe Bollard, the producer, is from Dublin, and is blind.

Campbell, Jane. 2003-05-23. "Building an Independent Living organisation fit for the twenty first century. Underpinning organisational development with empowering principals." Internet publication URL:

Dr. Jane Campbell, Chair of the Social Care Institute for Excellence in England, contemplates the future of Independent Living organisations, including work together with non-disabled persons (which she calls, "the mutuality route.") She concludes, "our independent living organisations to be fit for the 21st century we must have principles of: full inclusion, valuing diversity, equality of opportunity, human rights, civil rights, and citizenship."

Campbell, Jane. 1996. "'Growing Pains,' Disability Politics - The journey explained and described." Internet publication URL:

The author attempts to shed some light on the complex and often quite hidden political process of the Disabled Persons Movement over the past 30 years. She concludes, "The development of the social model and its journey into the very fabric of our communities through social, political and economic infrastructures, gives the disability movement the authority to say we have emerged."

Ratzka, Adolf (ed.). 2004-10. "Model National Personal Assistance Policy." ( PDFPDF, 45 KB.) A project of the European Center for Excellence in Personal Assistance (ECEPA). Internet publication URLs: and

Most people who depend on the help of other persons in the activities of daily living such as getting up in the morning, toileting or bathing face very limited lives in residential institutions or parental homes. How must the ideal national policy for personal assistance look that empowers them to live in the community, as equal and fully participating citizens, taking their rightful place in family, neighborhood and society, with work and families of their own? The European Center for Excellence in Personal Assistance (ECEPA) is a project run by people who themselves depend on personal assistance. This model legislation was formulated using their combined personal experience with personal assistance services in eight European countries.

Hasler, Frances. 2003-03. "A summary of the Department of Health (DoH) Figures for Direct Payments Users in the UK in 2002." Internet publication URL:

Presented at the European Network on Independent Living (ENIL) conference in Southampton, England, 7-9 March 2003.

Martinez, Kathy, and Duncan, Barbara. 2003-09. "The Road to Independent Living in the USA: an historical perspective and contemporary challenges." Reprinted form "Disability World, A bimonthly web-zine of international disability news and views," Issue no. 20 September-October 2003. Internet publication URLs: and

The authors (Kathleen Martinez, US National Council on Disability member and Deputy Director, World Institute on Disability, and Barbara Duncan, former Rehabilitation International information officer, DisabilityWorld co-editor) highlight the events and leaders that made the birth of the independent living movement possible. Also included are some basic philosophical tenets and assumptions that have guided the U.S. IL movement, as well as some observations regarding emerging issues and trends.

Rajkov, Gordana. 2003. "Inependent Living and Yugoslav Experience." Internet publication URL:

The report presented on behalf Centre for Independent Living of Serbia, at the Europena Network on Independent Living (ENIL) Conference in Southampton, England, 7-9 March 2003. Gordana R. is a founding member of CIL in Serbia, and in the report she is explaining the current situation of disabled people in Serbia in the light of economic, social and political context, and CIL's efforts to promote the idea of Independent Living Phylosophy in Serbia, particularly the PA Service, through pilot projects and research.

Ratzka, Adolf. 2003-08. "From patient to customer: Direct payments for assistive technology for disabled people's self-determination." Internet publication URL:

The author, AT user and activist in the Independent Living movement, claiming that direct payments for AT result in better quality and cost-efficiency than services in kind, suggests a pilot project to test the hypothesis. Plenary paper presented at the 7th European Conference for the Advancement of Assistive Technology, "Shaping the Future", Dublin, Ireland, August 31st - 3rd September 2003.

Seifu, Michael. 2004-02. "Reflections by a Disabled Economist from Ethiopia." Internet publication URL:

The author, a trained economist with a disability living and working in Ethiopia, describes the experience of disability in the context of a developing country.

Seifu, Michael. 2004-05. "International cooperation - but how?" Internet publication URL:

The author, an economist in the Ethiopian government who has a disability,shares his views on the bottlenecks of present international development aid.

Uddin, Salah. 2003-09. "Disability Situation & Impact of ADD work in Bangladesh." Action on Disability and Development (ADD), Bangladesh. Internet publication URL:

Uloba, Norway. 2003-03. "Uloba - Independent Living Norway Cooperative for Consumer controlled Personal Assistance." Internet publication URL:

Presented at the European Network on Independent Living (ENIL) conference in Southampton, England, 7-9 March 2003.

Chapters from the forthcoming English version of: Alonso, J. Vidal Garcia. 2003. "El Movimiento de Vida Independiente, Experiencias Internacionales." ("The Independent Living Movement: International Experiences.") Internet publication URL: (In Spanish, PDF, 1.46 MB).

Heumann, Judith E. 2003. "Foreword to The Independent Living Movement: International Experiences." Internet publication URL:

Judith E. Heumann, MPH (Masters in Public Health), Advisor on Disability and Development, The World Bank tells about her own life and how as she was continually aware of the invisibility of disabled people in society. In her work with the World Bank, she has travelled widely and points out, "Poverty and social discrimination have gone hand in hand."

Barnes, Colin. 2003. "Independent Living, Politics and Implications." Internet publication URL:

Colin Barnes is Professor of Disability Studies and Director of the Centre for Disability Studies in the Department of Sociology and Social Policy at the University of Leeds, England. In this chapter of the book he gives a concise explanation of orthodox thinking on disability and an a different perspective developed by disabled people themselves. He then examines the concept of independent living and its impact on policy development.

Evans, John. 2003. "The Independent Living Movement in the UK." Internet publication URL:

John Evans was one of the founders of Project 81 that marked the beginning of the Independent Living Movement in the UK. Since 1996 he has been the chair of the European Network on Independent Living (ENIL). In this document he gives an overview of the origin of the Independent Living Movement in the UK, it's development and evolution, as well as the current situation.

Hasler, Frances. 2003. "Philosophy of Independent Living." Internet publication URL:

Frances Hasler, Chief Executive of the National Centre for Independent Living, UK, summarises the philosophy of independent living by quoting Philip Mason, John Evans, Adolf Ratzka, Martin McNaughton, and others. Included is a summary of the seven "basic needs" of independent living identified by Derbyshire CIL.

Malinga, Joshua T. 2003. "The African View of Independent Living." Internet publication URL:

Joshua T. Malinga, Secretary General, Pan African Federation of the Disabled (PAFOD), and Past World Chairperson, Disabled Peoples' International (DPI) gives an overview of Indepedent Living in Africa. He concludes that, "Independent Living in Africa is basically in theory form and is still in its rudimental stages due to a number of factors."

Martinez, Kathy. 2003. "Independent Living in the U.S. & Canada." Internet publication URL:

Kathy Martinez is International Director and Deputy Director of the World Institute on Disability, Oakland, USA. She gives an overview of events in the U.S. and Canada that made the independent living movement possible. She also covers the basic philosophy of the U.S. IL movement, as well as emerging issues and trends that challenge the IL movement.

Ratzka, Adolf. 2003. "Independent Living in Sweden." Internet publication URL:

Account of the emergence of the Independent Living movement in Sweden, the social policy climate at the time, its struggles, achievements and challenges from the perspective of the person who introduced the independent living concept to Sweden.

Zarb, Gerry. 2003. "The Economics of Independent Living." Internet publication URL:

Gerry Zarb, a Policy Analyst at the Disability Rights Commission in the UK, examines some main issues in the economics of independent living. His main theme is that expenditure on independent living schemes should be seen as a form of positive investment.



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