Investigate and actively support
current issues affecting the lives of people with disabilities.


Advocacy – "Giving aid to cause: active verbal support for a cause or position."

Personal advocacy
Advocacy happens on many levels and IVUN encourages Members to utilize its comprehensive information and extensive network of people and organizations to advocate for themselves.

Community advocacy
IVUN wants its Members to achieve and maintain independent living, but also asks its Members to be active in solving the larger issues facing all people with disabilities.

IVUN's Advocacy Roots

IVUN continues its tradition as an advocacy organization by initiating and supporting activities that promote the independent living philosophy.

Gini Laurie, founder of International Ventilator Users Network, an affiliate of Post-Polio Health International (formerly Gazette International Networking Institute), earned the moniker of "grandmother of the independent living movement" for her years of gathering names and experiences of people with significant disabilities.

Laurie loved "learning new things" and early on recognized the power of information and peer support. Her newsletters, which evolved into an annual journal in the '70s and '80s, featured letters from her "friends around the world," who shared the life stories – how they got an education, became employed, fell in love and had families. She delighted in connecting people with common problems and interests and set back and watched them "go to work."

Independent Living: The Role of Gini Laurie

by Joan L. Headley, Executive Director, PHI/IVUN

What is Independent Living?
A personal definition by Adolf Ratzka, PhD

Independent Living is a philosophy and a movement of people with disabilities who work for self-determination, equal opportunities and self-respect.

Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation.

Independent Living means that we deman the same choices and control in our everyday lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and interests, and start families of our own.

Since we are the best experts on our needs, we need to show the solutions we want, need to be in charge of our lives, think and speak for ourselves – just as everybody else.

To this end we must support and learn from each other, organize ourselves and work for political changes that lead to the legal protection of our human and civil rights.

Reprinted with permission of Adolf Ratzka, 2007, Independent Living Institute,

Disability: Legal/Administrative Definitions

Americans with Disabilities Act
The ADA defines disability with respect to an individual in three prongs as follows:

  1. A physical or mental impairment that substantially limits one or more of the major life activities of such an individual;
  2. A record of such an impairment; or
  3. Being regarded as having such an impairment.

"Major life activites" include functions such as activities of daily living, walking, seeing, hearing, speaking, breathing, learning (including attending school) and working. State law and case law may further define "disability." The phrase "regarded as" is noteworthy, as the intent is to define discrimination based on stigma regardless of whether the individual actually has a disability that limits a major life activity.

US Social Security Administration
The US Social Security definition of disability requires that the individual demonstrate: "... the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or has lasted or can be expected to last for a continuous period of not less than 12 months." Thus, an individual may have a disability that is protected by the ADA, Section 504, and some state laws, but not qualify for Social Security Disability Income (SSDI). State disability programs may have different definitions and requirements, and the provider should be familiar with state disability statutes and procedures.

Public Health Definitions

Centers for Disease Control and Prevention
The Centers for Disease Control and Prevention (CDC) defines disability as "interactions between individuals with a health condition and barriers in their environment." People with disabilities are regarded as those "having an activity limitation or who can use assistance or who perceive themselves as having a disability." The CDC further defines secondary conditions as "medical, social, emotional, family or community problems that a person with a primary disabling condition likely experiences."




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