Foundations of Independent Living: History of Independent Living
Transcript
Foundations of Independent Living: History of Independent Living
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Welcome to RapidCourses, a self-paced learning option, available 24/7, designed to provide you with essential, fundamental knowledge of the independent living field. Here are a few tips for easy navigation. Click the BACK and NEXT buttons at the bottom right portion of the page to move backward or forward through the module. Found on the left side, the Menu, Tools, Glossary, Help, and Audio Script buttons can provide you with additional information throughout the course. Menu - displays course contents, available anytime except during a Knowledge Review or Final Quiz;Tools - contains downloadable tools and forms; Glossary - displays pre-defined terms used in this course
Help - provides help with navigation and control bar items, exam question types, page links; Audio Script - shows or hides transcript of audio narration. This module is narrated, so please turn on your speakers. You can click the Audio Script button to view the transcript of the narration. Click the EXIT button at the bottom left portion of the page to exit the module at any time. If you do not complete the module, your progress will be saved. One issue that you may encounter is your pop up blocker preventing links from launching. To resolve this, hold down the CTRL key when opening links. For more information about pop up blockers, click here.
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Module Overview
The independent living movement is an important part of the broader movement for disability rights. This module provides an historical overview of the emergence of the independent living movement and its importance in shaping societal attitudes. This module is divided into the following sections: History of Disability Rights; Emergence of the Independent Living Movement; and, Leaders of the Independent Living Movement. This module should take approximately 30 minutes to complete with a graded quiz at the end.
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What You Will Learn
- The relationship between the history of the Disability Rights Movement and the emergence of the Independent Living movement;
- The differences between the traditional medical and rehabilitation model and the philosophy and concepts of Independent Living; and
- Key leaders and events that launched and now sustain the Independent Living movement.
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Historical View of Disability
People with disabilities in Western culture have been defined as objects of shame, pity, fear, or ridicule throughout the centuries. Early settlers to this country would not admit people with disabilities because they believed such people would require financial and other support. Colonists enacted settlement laws that restricted the immigration of people with disabilities.
During the 1800s and early 1900s disability was considered the will of God. Religion encouraged people to be compassionate and pitying toward people with disabilities. People with disabilities were expected to be patient, uncomplaining, and humble and to make themselves useful.
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Role of Institutions
Up until 1920, people with disabilities were primarily placed in institutions, many of which were established for custodial care with no pretense of education. In 1841, Dorothea Dix traveled over 60,000 miles across the United States to observe and report their living conditions, “abandoned to the most loathsome necessities or subject to the vilest and most outrageous violations."
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The Eugenics Movement
Toward the end of the nineteenth century and during the first part of the twentieth century, the eugenics movement contended that people with disabilities should not be allowed to survive or reproduce because they would weaken the gene pool of the human race and cause social problems and degeneracy. This movement had an extremely destructive impact on public attitudes toward people with disabilities. Scientists eventually disproved the basic tenets of the eugenics movement but not until after the forced sterilization of thousands of men, women, and children.
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Emergence of the Vocational Rehabilitation System
Rehabilitation services on a broad scale were introduced as a federal program following World War I, with an emphasis on veterans with disabilities. The need for training or re-training created one of the first federally funded programs for people with disabilities – now known as the federal-state vocational rehabilitation system. Other major services for people with disabilities were not seriously considered by federal legislation until the social change movements during the 1960s.
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Traditional Medical and Rehabilitation Models
The traditional medical model and traditional rehabilitation services put doctors and other professionals in charge of the decision-making about the lives of people with disabilities. The goal was often to either “fix” people with disabilities, or to segregate those who couldn’t be “fixed” in institutions. Theindependent living movement is a reaction to the traditional service delivery and particularly the “medical model” and to the growing preference for people with disabilities for self-determination, civil rights, and equal access.
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Five Social Movements
During the 1960s and 1970s, five social movements converged, creating the necessary atmosphere for both the disability rights movement and the establishment of centers for independent living. (1) Deinstitutionalization was based on the idea that to achieve “normal” behavior, the person should be in as “normal” a setting as possible; (2) The Civil Rights movement raised awareness about achieving equal rights under the law. This opened the door for making it illegal to discriminate in employment based on disability; (3) The Self-Help movement, also called Peer Support, asserted that people who share similar experiences are more likely to understand each other and provide more effective assistance; (4) Demedicalization looked at more holistic approaches to health care with individual empowerment and responsibility for defining and meeting one's own needs; and, (5) Consumerism questioned product reliability and price leading to the fundamental belief that consumers of goods and services should have control over the choices and options available to them.
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Centers for Independent Living
Centers for Independent Living (CILs) are the operational and programmatic aspect of IL. These are private, non-profit, community-based, and consumer-controlled organizations. At least 51% of their staff and management must be people with disabilities and at least 51% of their governing boards must be people with significant disabilities.
Centers promote and practice the independent living philosophy through the following core services: Systems Advocacy; Individual Advocacy; Peer Support; Information and Referral; Independent Living Skills Training;Institutional Transition; Institutional Diversion; and Youth Transition. CILs also may provide a wide range of other services that support independent living. Independent Living is a part of the larger Disability Rights movement which includes various organizations, groups, and individuals with a common purpose of securing civil rights, legal protections, and policies for people with disabilities.
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Comparison of Rehabilitation and IL Paradigms
The Independent Living or IL paradigm and philosophy are different from the medical model and call for a different way of perceiving and relating to people with disabilities. In the late 1970s, Gerben DeJong proposed a paradigm shift from the medical to the IL model.His model identified that the problems people with disabilities face are with society, not the individual. In the IL paradigm, disability is considered a natural part of the human experience. People with disabilities have the right to live with dignity and fully participate in the communities of their choosing and to make decisions that affect their lives. Problems of environmental, social, and economic barriers are decreased through civil rights protections, removal of barriers, and strong advocacy efforts for change. Click the link here to view a Comparison of Rehabilitation and Independent Living Paradigms.
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Ed Roberts
Who were the leaders involved in initiating the IL movement? Ed Roberts is considered by many to be the father of Independent Living. In 1970, Ed and other students with disabilities founded a disabled students’ program on the Berkeley campus called the “Rolling Quads.” In 1972 Ed and other advocates started the first Center for Independent Living in Berkeley, California, becoming the model for every center in the country. This new program rejected the medical model and focused on consumerism, peer support, advocacy for change, and independent living skills training.
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Judy Heumann and Wade Blank
Judy Heumann is an internationally recognized leader in the disability community and a lifelong civil rights advocate. She organized a takeover of the San Francisco federal building to protest the stalled implementation of Title V of the Rehabilitation Act. She also founded Disabled in Action (DIA), an organization that focuses on securing the protection of people with disabilities under civil rights laws. Wade Blank, in 1974, founded the Atlantis Community, a model for community-based, consumer-controlled, independent living. In 1978, Wade and Atlantis realized that access to public transportation was a necessity if people with disabilities were to live independently, so the American Disabled for Accessible Public Transit (ADAPT) was founded.
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Lex Frieden
Lex Frieden founded Independent Living Research Utilization (ILRU) in 1977. This program provides training and technical assistance to centers for independent living and statewide independent living councils, as well as information and training to states on home and community-based services. ILRU is also a disability law resource to businesses and individuals. As Executive Director of the National Council on Disability in the mid-80s, Lex provided oversight of the publication “Toward Independence," and was one of the major figures behind the enactment of the Americans with Disabilities Act in 1990.
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Justin Dart
Justin Dart was an activist leader who was loved and respected in the disability community. Justin played a prominent role in the fight for passage of the Americans with Disabilities Act, and founded Justice for All with other activists to defend against congressional attempts to weaken the ADA. Many view Justin as the spiritual leader of the IL movement.
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National Council on Independent Living and World Institute on Disability
Marca Bristo, Charlie Carr and Max Starkloff led the founding of the National Council on Independent Living (NCIL). NCIL is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents CILs, statewide independent living councils (SILCs), otherdisability rights organizations, and individuals with disabilities throughout the United States. In 1983, Joan Leon, along with Ed Roberts and Judy Heumann, co-founded the World Institute on Disability (WID), an advocacy and research center promoting the rights of people with disabilities around the world.
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Liz Savage and Pat Wright
Liz Savage and Pat Wright led the consumer effort for passage of the Americans with Disabilities Act and worked to establish acceptance of disability rights as a legitimate civil rights cause within the broad civil rights community as well as within traditional disability services organizations.
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Association of Programs for Rural Independent Living
Founded in 1986, Association of Programs for Rural Independent Living (APRIL) is a national grassroots, consumer controlled, nonprofit membership organization consisting of CILs, their satellites and branch offices, SILCs, other organizations, and individuals concerned with the independent living issues of people with disabilities living in rural America.