Tag Archives: Consumer Control

Independent Living Words of Power: Comments to the ILA

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In preparation for the CILs’ administrative move to the the Independent Living Administration at the Administration for Community Living at the Department of Health and Human Services, we wrote expanded definitions of key words used in the Workforce Innovation & Opportunity Act. The advocates who created Centers based on IL philosophy would be disturbed at the current “re-interpretation” of their words by Michigan CILs. Please send your comments to add or edit the definitions.

Language: conveyor of philosophy and culture 

Significant Disability: The Act repeatedly says “significant disability” to distinguish it from the broader term “disability” and focuses the services and resources on the individuals who have historically been the most segregated and least independent. They, people with significant disabilities, are the most qualified to direct and deliver IL services, because their lives depend on the same systems, and they have developed a skill set interacting with systems that will empower others.

Consumer: For the purpose of the Rehab Act Title VII, consumer means a person whose ability to be independent in the community, in their home, or at work, is substantially reduced by a mental, physical, sensory, developmental or other significant disability. Consumers with significant disabilities use equipment or other accommodations that support access and participation at home, the community, and employment. Consumers frequently have personal experience utilizing the publicly-funded systems intended to support the Disabled. Systems are often designed to be person-centered, but too frequently keep the Disabled poor and dependent. This knowledge and experience is necessary for the provision and administration of core services.  Continue reading →

Self-evident Truths of Independent Living Philosophy

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To have an independent living movement there are only a few principles that are immutable. “I speak for myself.” It summarizes the revolution from dependence to independence. Once our lives were controlled by experts; doctors, teachers, researchers, institutions, but now as a consumers, Disabled people make informed choices about every aspect of life. “I am responsible to make decisions, weigh risks, deal with consequences, fair and fowl, and to measure personal satisfaction in my terms.” Service delivery systems are structured by national policy making the individual served responsible to create service plans that express their personal standards for a meaningful life. There aren’t, in theory, any conditions or qualifiers placed on the inherent right of every individual to design their service plan to meet their specific goals irrespective of their diagnosis or level of disability. “I am empowered by the act of asserting my voice and taking responsibility for my decisions.” No non-disabled person should speak on my behalf or usurp my voice.  Continue reading →

Channeling of Anger on the Part of the Consumer into Constructive Organizing

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Putting Advocacy Rhetoric Into Practice: The Role of the Independent Living Center

By June Isaacson Kailes

This is an except from Putting Advocacy Rhetoric Into Practice: The Role of the Independent Living Center (Word document).

“This role is core to the ILC mission and philosophy.  We must militantly guard this dual commitment!”

Introduction

This monograph is intended to reinforce the importance of both individual and system/community advocacy.  Its emphasis will be on systems advocacy with independent living centers (ILCs).  The major areas to be discussed include:  examination of the importance of advocacy, establishment of an effective advocacy approach, development of new consumer leadership, and identification of advocacy questions needing further attention and debate.

It is no secret that the independent living movement is being criticized by disability rights advocates who charge that:

  • The commitment of center board and staff members to advocacy is waning and ILCs are becoming no different than traditional human service agencies.
  • The fervor for changes in “the system” is being crushed by bureaucratic, administrative, and contractual compliance concerns.
  • ILCs have absorbed and quieted many effective advocates and have played a role in draining the disability rights/independent living movement of advocates.

We in the independent living movement need to ask ourselves if these are valid criticisms.  Are we losing sight of a fact pointed out by Peg Nosek, Justin Dart, and Yoshiko Dart that our society still uses, as it “has traditionally used, an extensive and sophisticated program of psychological, physical, and economic threats, punishments, and barriers combined with rewards that force people with disabilities into segregated situations and subservient roles” (Nosek, Dart, and Dart, 1981)?  It remains critical for ILCs as well as others in the disability rights movement to devote a portion of their financial as well as personnel and volunteer resources to consumer and public education and to consumer and class advocacy in order to abolish these disincentives to independent living.  Given these concerns, it is important to start this discussion with a review of the importance of advocacy. Continue reading →