The Independent Living Movement

By Willa Reising

Since 1773 disabled people were institutionalized and were treated aggressively by their caretakers in America. It took until the 1960s for this to change when disabled people advocated for themselves to be able to live independently. This would be known as the Independent Living Movement and was based on the philosophy that disabled people are the best experts of what they need for their care and that they are deserving of equal opportunity for life, work, and taking part in their communities. [1] This movement was significant because it gave disabled people the opportunity to have control over their lives and have self-determination. In this article I will be discussing how this movement happened and the continuation of these centers for independent living today.

Before the independent living movement began in the 1960s many disabled people were institutionalized. These institutions were “a facility of four or more people who did not choose to live together,” and these facilities often included people struggling with mental health or an intellectual or developmental disability. [2] The first known institution predates the founding of our nation in 1773 and was called the Publick Hospital for Persons of Insane and Disordered Minds located in Virginia. At this facility they would chain or shackle patients, physically abuse them, and initially feed them rotten food. These patients were rarely released and sometimes put in prison either before or once they were diagnosed as insane. Nothing changed at these institutions until 1840s when Samuel Gridley Howe founded a new institution in Boston, Massachusetts which had treatments that the patient consented to. However, by 1973 the facility was closed down due to child abuse and neglect.

         The independent living movement began in the late 1960s, and the first center was opened in 1972 in Berkeley, California by Ed Roberts. [3] Ed Roberts founded the first independent living center in Berkeley after his experience as a college student at the University of California Berkeley. [4] Roberts had post polo quid and lived at a hospital during college where he had to be back in his room by 10pm. He also was unable to make any basic college decisions which many of his peers did not think about. His center for independent living focused on assisting people with disabilities so that they could live in a community. There were many other people involved in this movement like Gerald Baptiste who was the associate director of the Berkeley Center for Independent Living in the 1980s. He was also an activist during the Civil Rights Movement of the 1960s which many other disabled people participated in. There was also Judy Heumann who was involved in protest at Long Island University in Brooklyn, New York and organized Disabled in Actions which was one of the first disabled advocate “groups that crossed disability lines.” [5]

         In 1978 Congress passed the Rehabilitation Act which added amendments like the Comprehensive Services for Independent Living “which allowed funds previously designated for use in employment by individuals whose serve disabilities might preclude employment. Centers receiving those funds had to involve disabled persons in policy direction and management.” This meant that these centers would receive federal funding and need to involve disabled people in the management of the center. Then in 1982 the Center for Accessible Living in Louisville, Kentucky began a newsletter called The Rag about disability issues and even was on The Wall Street Journal’s front page in 1985. This newspaper received little funding through donations or ads because the subscribers funded it.

         Centers for independent living have continued to be available across the United States. The most recent building of an independent living center was in Alsip, Illinois by its mayor John Ryan who was trying to a fill a vacant area and stumbled upon the idea to create an independent living center for disabled people. This center for independent living will receive support for the residents by the Sertoma Star Services. Services that they will receive are social support, counseling, job training and placement, assistance with grocery shopping and bill management. The center will also be close to stores, library, pharmacies, parks, recreation facilities and transportation. This shows a continuation of the importance of independent living centers. [6]

         The significance of the independent living movement was that before many disabled people were institutionalized and abused by their caretakers. However, in the 1960s disabled people advocated for their autonomy because of their experience of being in college and still not having the same rights as any other college student to live on their own. Centers for independent living gave people with the disabilities the opportunity to live as they wanted and have autonomy over their lives.

References:

[1]. “About Independent Living.” National Council on Independent Living, https://ncil.org/about/aboutil/.

[2]. Delano, James. “A History of Institutions for the People with Disabilities: Neglect, Abuse, and Death.” University of Alabama at Birmingham Institute for Human Rights Blog, October 23, 2023, https://sites.uab.edu/humanrights/2023/10/25/a-history-of-institutions-for-people-with-disabilities-neglect-abuse-and-death/

[3]. Heumann, Judith E. “Independent Living Movement: Organizing for an Active, Disabled Old Age.” Generations: Journal of the American Society on Aging, vol. 8, no. 4, 1984, pp. 29–30.

[4]. Scotch, Richard K. “Politics and Policy in the History of the Disability Rights Movement.” The Milbank Quarterly, vol. 67, 1989, pp. 380–400. JSTOR. “The History of Independent Living Movement.” Northeast Independent Living Program, Inc, https://www.nilp.org/history-of-independent-living-movement/.

[5]. Scotch, Richard K. “Politics and Policy in the History of the Disability Rights Movement.” The Milbank Quarterly, vol. 67, 1989, pp. 380–400.

[6]. Jeff, Vorva F. "Supportive Housing Project Set to Help Disabled People: 25-Unit Space for Independent Living in Alsip Gets Started." Chicago Tribune, Nov 04, 2024.