Statewide Independent Living Council | Independent Living
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INDEPENDENT LIVING HISTORY AND PHILOSOPHY

Ed Roberts, Fred Fay, and Judy Heumann, and Justin Dart

Independent Living

 

Most people take for granted their ability to choose where and how to live, work, and play. For the more than a million Tennesseans with disabilities though, barriers in our communities often limit or remove opportunities for choice. Barriers may be obvious. The apartment you want to live in may not have any access ramps for your wheelchair. Or the book you want to borrow from the library might not be available in Braille. Often barriers are less obvious though. Misunderstandings and prejudices about disability may prevent you from being offered an educational scholarship or leadership position at work, or you may be overlooked as a potential board member or volunteer. These barriers result in lives that are less independent and constrained by social and cultural systems of inequity, not developmental or physical disabilities. Independent Living is the belief  that people with disabilities should not face barriers to the lives they want to lead that are greater than the barriers faced by their neighbors without disabilities.

IL History

 

In the 1960s, the Independent Living (IL) movement, inspired by the civil rights movement in the United States, united people with disabilities to fight for equality and inclusion. Leaders of this movement, such as Ed Roberts, Fred FayJudy Heumann, and Justin Dart, rose up to share a message of equality, deinstitutionalization and community living, autonomy, and self-determination for people with disabilities. Early successes for the IL movement included the passage of the 1968 Architectural Barriers Act, the 1970 Urban Mass Transit Act, and the 1973 Rehabilitation Act, which established the Centers for Independent Living (CILs), and facilitated a country-wide focus on the Independent Living philosophy. Later successes of the IL movement included the passage of the 1990 Americans with Disabilities Act (ADA), the groundbreaking policy ensuring civil rights for individuals with disabilities, and the addition of Section 705 to the Rehabilitation Act in 1992, which authorized the creation of the Statewide Independent Living Councils to support the work of CILs.

The film Lives Worth Living shares the story of the disability rights movement. In it, the history of the disability rights and IL movements are detailed and the contributions of IL leaders are highlighted.

IL Philosophy

 

The IL philosophy, in contrast to the medical philosophy of disability, identifies the focus of ‘disability’ for people with disabilities as ‘social barriers,’ not ‘the impairment itself.’ Therefore, the IL philosophy seeks to empower people with disabilities to exert influence, choice, and control over all aspects of their lives. In practice, IL support teaches the self-advocacy process of goal determination and navigating barriers to one’s goals. For example, Ashley, who is deaf-blind, wished to work with families with children with disabilities, but she needed guidance and support to meet this goal. Ashley worked with an IL specialist in Tennessee to receive peer support, independent living and self-advocacy skills training, and access to interpreters she needed to attend university. Now, due to Ashley’s hard work utilizing her new IL skills, she is well on her way to receiving a degree in social work.

 

As Ashley’s experience shows, when people have access to an inclusive accessible society and independent living skills they experience quality of life improvements that are well documented. Numerous, longitudinal research studies around deinstitutionalization have shown resounding positive results, including improved health and happiness, when people are moved from institutions like nursing homes to smaller integrated community settings. Furthermore, research shows that enhanced independence and self-determination, like that achieved through IL, correlates with superior health outcomes, perceived health status, greater satisfaction, and can lower healthcare costs.

CENTERS FOR INDEPENDENT LIVING

In Tennessee, six Centers for Independent living in the state’s IL Network provide IL services to consumers, often peer-to-peer, through IL specialists.

The services provided by IL specialists are as complex and unique as the consumers themselves. Specialists may provide information and referrals, so people know where to go and who to contact to meet their goals. Or specialists may provide skills training ranging from using adaptive equipment to managing finances, or from cooking on a budget to hiring a personal attendant (PA). For almost every consumer, training includes self-advocacy and systems advocacy skills, which support people in meeting individual needs, as well as shifting policies and practices that impact many people with disabilities. For adult consumers transitioning from nursing homes to community settings or youth transitioning to adulthood, post-secondary education and employment, IL specialists focus on skills necessary to navigate these uniquely complex passages.

 

In line with IL philosophy, CIL’s and the SILC TN strictly adhere to federal guidelines requiring at least 51% of the employees and boards of directors are people with disabilities. This guidance provides the structure to offer programs for people with disabilities by people with disabilities.