New Publication: Global Snapshot of Independent Living: 2003

Summary
This volume provides a global snapshot of the state of the art of independent living, as well as a progress report since the International Summit on Independent Living held in Washington, D.C. in 1999. The Summit, supported by the U.S. National Institute for Disability and Rehabilitation Research, was a unique opportunity for more than 125 independent living leaders from around the world to meet face to face to assess progress across countries and regions. In fact, it was the first such opportunity in the 30 years of the independent living movement   where   IL experts assembled from 50 countries.

The Summit was organized by the Independent Living Research Utilization (ILRU) arm of the Institute for Rehabilitation and Research with the assistance of the World Institute on Disability (WID) and Rehabilitation International (RI). A full report of the Summit is available online: www.ilru.org/international

Based partly on the success of the Summit in collecting significant information and analysis of the growth and future directions of IL, the World Institute on Disability developed a plan to provide on-going progress reports through an electronic magazine or webzine. With funding from NIDRR, in March 2000, DisabilityWorld was launched (www.disabilityworld.org) with the objective of providing a regular channel for reporting on the implementation and progress of independent living and community integration throughout the world. Partners in this project are ILRU, RI and the Inter-American Institute on Disability.

Building blocks of independent living
In DisabilityWorld, reports are organized around the building blocks or discrete aspects of independent living: development of IL organizations and services, accessibility, assistive technology, governance and legislation, training and employment, and the growth of disability culture, especially as expressed through the arts and mass media. In October 2003, the 20 th issue in English and Spanish was posted, bringing the total of published articles to more than 1500.

Some of the articles in this volume appeared originally in DisabilityWorld, others have been reprinted with permission from www.independentliving.org, the International Journal of Rehabilitation Research, the International Rehabilitation Review or translated from the El Movimiento de Vida Independente: Experiencias Internacionales (The Independent Living Movement: International Experiences) published in 2003 by Fundacion Luis Vives in Madrid.

Range of papers and approaches in this volume
The papers from Africa, the Americas, Asia and Europe were selected for this volume based on their contribution to advancing the understanding and growth of independent living as a philosophy, social change movement and associated service delivery system in a particular country or culture or region of the world.

Varied terminology is used in different countries and languages to express the essence of IL: in Asia, the term used most often is self-help; in Germany and other European countries, it is called self-determined living; and in many poor countries, the community based rehabilitation approach is reportedly becoming the equivalent of independent living. The statement of consensus of the 1999 Summit, known as the Washington Declaration, acknowledged these terminological preferences in its citation of the basic principles of IL as: "human rights, self-determination, self-help, peer support, empowerment, community inclusion, cross-disability inclusion, risk-taking and integration."

Papers selected for this volume range from historical perspectives of the IL movement in North America, to an overview of the rapid growth of IL centers in Latin America, to contributions from Asia illustrating the variety of approaches in China, Japan and India, to a European perspective on personal assistance services, to a profile of a British organization that is working to advance the IL approach in Africa and Asia, to overviews of how social change is evolving both in Mozambique and South Africa.

The country and regional papers are followed by an international timeline of landmark events in development of the independent living movement the world over. The timeline was created for the 1999 IL Summit and has been substantially updated for this publication.

The volume concludes with an international literature review drawn from various sources.

In conclusion
One of the difficulties of tracking the successes, failures, generational iterations and permutations of independent living is that quite often, writers and researchers interchange or conflate the terms "independent living" and "disability rights." For this volume, we have attempted to separate the two concepts, while acknowledging that their development is often in tandem.

Additionally, we have searched out papers that reflect Adolf Ratzka's definition of independent living (www.independentliving.org): "Independent living is a philosophy and a movement of people with disabilities working for self-determination, equalization of opportunities and self respect.

"Independent living means we demand the same choices and control over our everyday lives as our non-disabled brothers and sisters, neighbors and friends take for granted...We want to grow up in families, go to the neighborhood school, use the same bus as our neighbors, work in jobs in line with our education and abilities, and start families of our own. Just as everyone else, we need to be in charge of our lives and think and speak for ourselves."

Using this definition, we are featuring articles and papers that enlighten the reader about how the everyday life of disabled children, women and men is changing in various countries and cultures due to the vision and leadership of disabled people's organizations and their allies. We suggest that taken together, this collection of papers and the timeline result in a significant record of incremental changes on a global basis.

On a parallel track, the international disability rights movement is also moving forward, aimed now at a United Nations convention as well as regional rights-based conventions. In most countries, it is only a small number of individuals--those trained in law, politics or diplomacy--who can lead the way towards conventions, treaties and laws.

In contrast, the international independent living movement is comprised of tens of thousands of individuals working on the nuts and bolts of improving their daily lives through increased access to services and inclusion in their local schools, workplaces, communities, town or city councils, transport systems, voting processes and a myriad of other public services. They may work through small independent living centers in Ontario, Tokyo, Rio or Toledo, through cross-disability organizations in India, South Africa or Mozambique, through a cooperative in Sweden or an international development group in the UK. They may be paid, but more often they are volunteers. They are putting the building blocks in place to support the next generation of efforts.

Research issues
Many of the papers in this volume suggest issues or questions that would benefit from research, including:

• In-depth characterization of the cultural variations of independent living
• Differing approaches to evaluating outcomes of independent living centers and organizations
• Influence or impact of the internet on improving communications among independent living entities
• How has the "service package" of independent living centers and organizations evolved over 30 years in North America?
• How are accumulated skills, knowledge and experiences of current IL leadership being passed to the next generation? Is there a discernible next generation and what are the emerging priorities?
• What constitutes training in IL, what are the curricula used and what is the impact of the training?
• Is "independent living" an identifiable module or component of university based disability studies courses? If so, what are the main references used?
• Is literature based on the IL approach being adapted for or made available to disabled pupils and students? If not, how are IL values being passed on to the next generation? If so, has this literature been evaluated according to the core IL principles cited above?
• Is the growth of "disability culture" (expressed through performing and fine arts, media), increasingly evident through the last decade, connected to the independent living movement?

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