An International Summit Conference on Independent Living

Washington, DC
September 21-25, 1999
___________

Analysis of the International Independent Living Timeline

Introduction

The following international timeline is based on a review of independent living literature and research conducted by Anne Finger, who served as the 1999 Independent Living Research Fellow for the World Institute on Disability and Rehabilitation International, funded by the NIDRR grant, International disability Exchanges and Studies 2000. Finger’s work was supplemented by contributions of many of the 110 disability leaders who participated in the Independent Living Summit held in Washington, D.C. in September 1999 and by Barbara Duncan of Rehabilitation International, and Kathy Martinez, Marc Behrendt and Bruce Curtis of the World Institute on Disability.

In the future, it is hoped this unique timeline will serve as a research tool. This analysis, however, is informal, designed to draw attention to two phenomena: 1) a pattern of development which suggests precursors or prerequisites to an identifiable independent living movement in the various countries; and 2) certain clusters of activities at given points in time which illustrate the influence of external political events and/or the growing international and regional collaboration within the international independent living movement.

Independent living has been defined as a social movement, which promotes the philosophy of self-organization, self-help, civil rights, and improved quality of daily life for people with disabilities. In contrast to the medical/rehabilitation model, the independent living paradigm focuses on environmental and social change rather than adjustment of the disabled individual. In describing the increasing disability activism of recent decades, some use the terms “disability rights” and “independent living” as interchangeable. And, while the independent living movement is allied with the disability rights movement, it can be distinguished from the disability rights movement by its core concern with improving the everyday life of individuals with disabilities. The disability rights movement is focused on improving the quality of life of disabled people as a class.

How did the independent living movement arise? What were the key events that led up to its development? How has the development of the independent living movement varied across national borders and among disability groups in different social and economic circumstances?

Prerequisites

The first prerequisite to the formation of an independent living movement is a sense of commonality among people with disabilities. This may arise out of shared experiences in hospitals and rehabilitation centers, or in the aftermath of events in which large numbers of people become disabled – such as polio epidemics or wars. Schools for blind or deaf people were also important early institutions which fostered a sense of shared identity and community.

In industrialized countries, one of the first precursors to the establishment of independent living is the provision of benefits and services to people with disabilities – such as income support, rehabilitation, education (often initially segregated), and creation of government organizations which address disability, albeit usually in a paternalistic manner.

In the United States, modest benefits and services were introduced following World War II; and extended to the polio survivors of the late forties and early fifties, many of whom returned to their families after their initial bout with polio rather than being institutionalized. In the aftermath of both World War II and the Vietnam War, important cultural representations of disabled people living independently emerged – films such as The Best Years of Our Lives and Coming Home are of note in the US. In general, European nations have a longer tradition of social welfare, often established just following World War I, although many disabled people were institutionalized, ostensibly for their benefit. These basic services allow disabled people some measure of autonomy and are part of the process of framing disability as a social issue, rather than as a solely personal one. In Latin American and Spanish and Portuguese-speaking Europe, Africa and Asia this step arose in the 1960's. In poor countries, because of far fewer financial resources, income supports were a rarity, and rehabilitation services reached a very small percentage of the population. However, the kernel of the disability movement often arose from those who were able to gain access to rehab centers – Brazil and Nicaragua are two notable examples.

The dominant paradigm at this juncture is the medical model: that is, the conception of disability as deficiency and of people with disabilities as in need of “cure” – or, failing that, special services controlled and administered by professionals. Such experts would determine who was disabled, how disabled they were, what services disabled persons needed to aid them in their quest for “normalcy,” and if those services would be institution or home-based.

Another important step on the road to independent living was the establishment of organizations addressing specific disabilities. Organizations of blind people – who were at least able to enter inaccessible spaces and could communicate with officials in the dominant language – were often the first groups able to lobby for work programs and income supports. In the US, the March of Dimes offered charitable services and created a “public persona” for polio; it was followed by any number of “disease-based” charitable groups. The disease focus of these groups continued to locate the problem within the disabled individual, rather than as part of a broader social structure. However, these organizations also brought disabled people into contact with each other and, although their focus was most often on cure, also did provide some support and assistance. One of the significant contributions that these charity organizations made towards the IL movement was their sponsorship of regularly held summer camps, many established between the First and the Second World Wars, which were usually targeted to people with specific disabilities. Many IL leaders recall that these camps were often the first opportunity for many people to shed the role of difference, to develop peer relationships and a sense of community.

The next significant development occurred when Disabled people began to form social organizations: these might be organizations that sponsored sports activities for disabled people, or clubs where disabled people met and interacted. In 1948, in conjunction with the Olympics, a competition was held for disabled athletes – primarily disabled veterans; in 1960, the first official Paralympic Games brought disabled people into contact across national borders. Through the connections formed by social networks, disabled people began to interact with each other, and began to discover commonalities. It is interesting to observe that in some countries the right to form associations was granted to sports groups long before it was granted to social change groups, and therefore today’s IL centers and disability rights groups often grew out of associations of disabled athletes.

The next development is self-organization: people with disabilities moving beyond social networks to form groups working for social change. The philosophy of the IL movement espouses that independent living organizations are cross-disability, growing out of the understanding of disability as a social, rather than a medical, issue. However, the majority of disability organizations are still disability-specific. The concept of Peer support – based on the notion that disabled people are the best “experts” on disability is a cornerstone of the independent living movement. De-institutionalization and access are most often the goals of these organizations.

In France, this happened as early as 1962, with the formation of the Group for Integration of Physically Disabled Persons (GIHP) – students who wanted to speak for themselves and create services they needed. In the United States, the organization of the Berkeley-based Center for Independent Living in 1972 is the best known example of disabled people as a group establishing their own cross-disability organization, and similar movements were also underway in Houston and St. Louis. In 1981 the British Council of Organizations of Disabled People, an umbrella organization of groups controlled by disabled persons was established. In Latin America, these steps were undertaken in the five-year period from 1975-1980; independent living centers were begun in Canada and Germany in the early 1980s; with centers begun in Ireland, Austria and the Netherlands in the early 1990s. In South Africa, the Self-Help Organization of Paraplegics was founded in Soweto in the late 1970s. The National Union of Disabled Persons of Uganda was founded in 1987.

Social Model emerges

Concurrent with the rise of self-organizations and cross-disability groups an important shift in the way that disability is conceptualized begins: the medical model gives way to the social model. No longer is disability seen as a problem located within the individual who needs to be treated and adjust her/himself to the prevailing social order. The need for individual change recedes; the focus is now on social change. The creation of the Symbol of Access by Rehabilitation International in 1969 was a universal signpost that disabled people around the world envisioned the possibility of architectural change and demanded its implementation.

As an outgrowth of this self-organization, people with disabilities begin to work for legislative change along with government and UN action. Some of this legislation was specifically oriented around disability rights (for example, provisions which prohibited discrimination in employment, housing, and education) while other legal changes funded personal assistance services, brought about accessibility of transportation, and economic support of independent living centers. In 1971, the UN’s Declaration of the Rights of Mentally Retarded Persons – modeled on the 1948 Declaration of Human Rights – framed the needs of disabled persons in human rights terms for the first time, as did the subsequent Declaration on the Rights of Disabled Persons in 1975. The disability focus was beginning to comprise more than prevention and rehabilitation: the issue was re-framed to emphasize full participation of and equal opportunity for people with disabilities. The United Nation's International Year for Disabled Persons in 1981 supported the growing focus on the rights as well as the self-identified needs of disabled people. Along with the subsequent International Decade of Disabled Persons, this played a key role in focusing international attention and funding on disability issues. National groups of disabled persons were formed in many countries, including Fiji, Thailand, Sri Lanka, Uganda, China, Jamaica, the UK, South Africa, Brazil and the Philippines, which raised disability issues throughout their respective countries. With substantial support from the UN, Disabled Peoples’ International was formed, which has been a key organization in bringing disabled people together across national boundaries and raising the visibility of the independent living movement.

The next building block for independent living was the formation of cross-national networks, with disabled people sharing ideas and resources across national boundaries. In South Africa, one step in this direction happened when disabled people from the minority white population attended a Rehabilitation International Congress in 1980, and returned with the philosophy of independent living, which was in many ways already being lived by blacks disabled in the anti-apartheid struggle. In Europe, ENIL (the European Network on Independent Living) was formed in 1990 to lobby within the EEC, now the European Union, for personal assistance services and the promotion of the independent living philosophy among political parties and governments. Many European and US leaders of the independent living movement have traveled abroad and helped spark the formation of movements in other countries. This is particularly evident in Japan, which has had a 20-year partnership with US IL leaders, and is now supporting IL development throughout Asia.

Other regional clusters of activity visible on the timeline include: the emergence of national cross-disability organizations in Russia and the countries of the former Soviet Union and Eastern Europe between 1988 and 1995. In addition, during the 1990’s, self-help groups began to form in the poorer Asian countries, reflecting support provided within the framework of the Asia-Pacific Decade of Disabled Persons.

International exchange of IL has certainly not been a one-way process. For instance, disabled people in developing countries have critiqued the whole notion of “independence” as a culturally loaded term, and substituted language, which conveys the notions of self-determination and self-help. This perspective has been helpful in the US, for example, when examining the cultural relevance of US-based independent living concepts for minorities and immigrant communities. The independent living movement which exists beyond the borders of the industrialized world has focused more on income-generation and obtaining basic assistive devices such as wheelchairs and prostheses, than on the development of personal assistance services and independent living theory. The belief in self-organization and the right to a self-determined existence unites the disability movement across borders and socio-economic differences.

View Timeline