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An International Summit Conference on Independent Living
Washington, DC
September 21-25, 1999
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Independent Living Philosophy

Introduction
Participants at the conference were encouraged by several international disability leaders to examine various aspects of Independent Living Philosophy in their regional discussion sessions. They were asked to define what independent living means in their country and culture and to identify the most important issues that they were facing for implementing independent living in their countries.
Participants in the North American and European regions framed Independent Living Philosophy primarily within a civil rights (rule of law) perspective. They make a distinction between independent living services and other activities in support of the overall disability rights movement. The advancement of independent living services is, more or less, a distinct subset of the overall disability rights agenda in their countries.
On the other hand, the participants from the Southern Hemisphere and Asia framed independent living philosophy completely within an international human rights perspective. They made no distinction between independent living philosophy, services, centers, etc. and their country's overall disability rights movement. The advancement of independent living is synonymous with the advancement of the disability rights movement in their countries.
The conference culminated with all participants crafting a Declaration which identified commonly shared values and goals for a global vision of independent living. The Declaration appears in full elsewhere in this volume, but the principles are restated here:
"We... reaffirm the global philosophy and principles of Independent Living:
• That all human life has value and that every human being should have meaningful options to make choices about issues that affect our lives;
• That the basic principles of Independent Living Philosophy are human rights, self-determination, self-help, empowerment, inclusion, risk-taking and integration."

Regional Variations
Within all regional discussions, there was common reference to certain core elements of independent living philosophy but a strong reluctance to adopt a single model of independent living from any country. In addition, there was a strong reluctance to prescribe specific methods or activities in order to achieve independent living in other countries.
Over and over again, different participants stated the necessity of cultural relevance to the implementation of independent living philosophy and activities in each country. Many participants, particularly in Asia, mentioned the necessity of translating independent living philosophy into culturally understandable terminology. However, all the participants could find consensus in the core elements of independent living philosophy as stated in the Declaration.
Priorities
The following issues were identified by the participants as priorities in clarifying and promoting independent living philosophy:
"Independent Living" vs. "Interdependent Living"
Asia: “Independent Living is a model to change society. We need to include the term ‘self determination’ as the common factor in our regional definition of ‘Independent Living.’ In the Asian context, the word ‘Independent Living’ is not popular. We prefer, ‘self reliant, to be able to make your own decisions, to control your own life.’ It is being economically independent, not dependent on your family.”
Thailand: “In the past we had to depend on other people and yet we did not want to be dependent. My working makes me independent now. In the Asian context, employment is essential for Independent Living. Independent means ‘interdependent’ in Asian culture. It is not possible in Asian culture that we live alone. ‘Interdependence’ could be a better way to explain the concept of Independent Living in Asia. It is important to teach our society about what we mean by Independent Living, so that culturally based misunderstandings are avoided.”
Russia: “We are all on different levels of independence. When our organization took on the name of an independent living center, non-disabled
people asked, independent of what? They couldn't understand the point of independence. It was difficult to explain that independence does not mean that I can do everything. Independence means that if there is going to be a staircase into the building then there also needs to be a ramp so I can go into the building independently.”
Cultural Realities of Independent Living
Latin America: “We suggested adopting an openness to the independent living philosophies that exist in different countries, thus avoiding a single interpretation of the independent living issues. What independent living means for one country that is developed against what independent living means for a country that is under developed, is very different. For example, in El Salvador, independent living can mean trying to get out of bed by using a wheelchair or crutches. Where in the United States, maybe independent living means finding employment.
Different countries present different realities. There are differences within the countries' rural and urban regions and among the region's disabled communities. We must work at:
• Reducing the communication gap between disability organizations in North, Central, Caribbean and South America. This meeting is an example of a process that could be used to increase our communication and understanding;
• Adopting an openness to the Independent Living philosophies and strategies that exist in different countries and avoid adhering to ‘one’ meaning and a single interpretation of Independent Living issues;
• Understanding the different levels of independence and what they mean for each individual, avoiding adhering to one model or single concept of independence; and
• Defining the concept of Independent Living as disabled people being contributors to society in whatever way we can, keeping in mind the different economic situations and resources available to countries in the region.”
Asia: “In our region, society understands independent living incorrectly, thinking that we want to live alone and apart from society. We disabled people understand what Independent Living is, but it is difficult to explain in our cultures.”
The Role of Non-disabled Persons
Whether or not non-disabled people have a role in this movement was debated. Some people felt that they didn't have a role, but others felt that non-disabled people have a role as students following the ideas and supporters of its goals. Everyone agreed that non-disabled people should not have a leadership role. Some comments follow:
Eastern Europe: “There was a very lively discussion about the question of people without disabilities in the Independent Living movement. The discussion ranged from saying that people without disabilities don't have a role in the Independent Living movement to disagreement on that score. Everyone agreed that people with disabilities needed to control the Independent Living movement and the independent living centers. There was not a general consensus about the role of people without disabilities.”
USA: “The role of non-disabled people is that they are objects of sensitization. We are trying to change their attitudes so they are objects of sensitization. This independent living movement is a struggle for social justice, therefore, their role is to support us and we have to educate them about it.”
Russia: “Non-disabled persons in organizations or independent living centers, they need to be the people that are implementing our ideas and our intentions. They need to understand us!”
Africa: “There is no concensus that non-disabled people should be excluded from the movement. What about people with hidden disabilities? We need to keep control, but not become exclusive.”
Control
Everyone seemed to agree that people with disabilities need to be in control of the movement, the organizations, and independent living centers. People with disabilities should be the teachers, the ones to generate the ideas and initiatives.
A lot of us feel very strongly that in independent living centers people with disabilities need to have the majority control of the board and of the staff. We as people with disabilities must definitely be in control. We must control the organizations that provide us services, we must control the organizations that we use to fight for our human rights.
Employment and Independent Living
There was no real consensus about the relationship of employment to Independent Living.
Japan: “We need to change the belief that if we do not work we cannot be independent. Even if we can't work, we are just as valuable as other human beings and should be treated that way. If we can be clear that successful Independent Living does not automatically mean that an individual is self-supporting financially or does not need personal assistance services then the idea of Independent Living will work in Japan. Being independent does not mean to live like Americans.”
Independent Living services should not be some kind of privilege that only people with "employability" can enjoy. Services should be available for an ordinary way of living, regardless of economic or educational factors, or the severity of your disability.
Thailand: “In the past we had to depend on other people and yet we did not want to be dependent. My working makes me independent now. In the Asian context, employment is essential for Independent Living.”
China: “Self-employment education is the key to Independent Living.”
France: “Independent living requires a thinking change. We have to change the view people have of themselves. Not as people who only have needs, but as people who have capacity and can contribute.”
Cross-disability Inclusion
Asia: “Everything should incorporate a cross-disability perspective. If you make recommendations, it is essential that all groups of disabilities be included (often excluded are people with psychiatric disabilities, cognitive disabilities). There is a lot of discrimination in all of our movements that excludes some disabilities. We can only be strong if we are inclusive.”
Latin America: “We should encouraging mutual respect and cooperation between disability organizations without imposing our opinion of what's better for the various disabled communities.”
Western Europe: “Further expansion of Independent Living should include persons with psychological and cognitive disabilities.”
Disabled Women
USA: “The role of women in independent living is very important. If you are a woman, you have double discrimination. If you are a woman with a disability, it is triple or quadruple discrimination and if you live in a developing nation, discrimination is off the wall. There must be equal representation of women at all levels of power within all independent living centers, movements or conferences. Women must and shall be represented equally.”
Eastern Europe: “Women need to be represented in any kind of disability meeting and involved at decision making levels in all aspects in Independent Living.”

©1999 ILRU Program. All rights reserved.