Advocacy - Post Polio

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

Personal advocacy

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

Community advocacy

PHI 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.

Independent Living: The Role of Gini Laurie by Joan L. Headley, Executive Director, PHI

PHI’s Advocacy Roots

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

Gini Laurie, founder 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.”

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 demand 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.

As long as we regard our disabilities as tragedies, we will be pitied.
As long as we feel ashamed of who we are, our lives will be regarded as useless.
As long as we remain silent, we will be told by others what to do.

Reprinted with permission of Adolf Ratzka, 2007, Independent Living Institute, www.independentliving.org

Issues

PHI endorses the advocacy of the following issues and encourages its Members to support them.

WE’RE STILL HERE!

Post-Polio Health International adopted WE’RE STILL HERE! in 2007 as the slogan for its annual awareness campaign held the second full week of October. Contact info@post-polio.org for permission to use.

Upcoming
2023 Campaign

2021 Contest Results
Grand Prize Winner
1st Runner-up
2nd Runner-up
3rd Runner-up
4th Runner-up

See the results of past campaigns.

Past Advocacy Issues

UNITED NATIONS

The Convention on the Rights of Persons with Disabilities and its Optional Protocol (A/RES/61/106) was adopted on 13 December 2006 at the United Nations Headquarters in New York, and was opened for signature on 30 March 2007. There were 82 signatories to the Convention, 44 signatories to the Optional Protocol, and 1 ratification of the Convention. This is the highest number of signatories in history to a UN Convention on its opening day. It is the first comprehensive human rights treaty of the 21st century and is the first human rights convention to be open for signature by regional integration organizations. The Convention entered into force on 3 May 2008.

The Convention follows decades of work by the United Nations to change attitudes and approaches to persons with disabilities. It takes to a new height the movement from viewing persons with disabilities as “objects” of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced.

The Convention was negotiated during eight sessions of an Ad Hoc Committee of the General Assembly from 2002 to 2006, making it the fastest negotiated human rights treaty.

Passed on September 17, 2008, and signed into law by President George W. Bush on September 25, 2008, the ADAAA was a response to a number of decisions by the Supreme Court that had interpreted the original text of the ADA. Because members of the U.S. Congress viewed those decisions as limiting the rights of persons with disabilities, the ADAAA effectively reversed those decisions by changing the law. It also rejected portions of the regulations published by the Equal Employment Opportunity Commission (EEOC) that interpret Title I (the employment-related title) of the ADA. The ADAAA makes changes to the definition of the term "disability," clarifying and broadening that definition—and therefore the number and types of persons who are protected under the ADA and other Federal disability nondiscrimination laws. It was designed to strike a balance between employer and employee interests.

The ADAAA requires that courts interpreting the ADA and other Federal disability nondiscrimination laws focus on whether the covered entity has discriminated, rather than whether the individual seeking the law's protection has an impairment that fits within the technical definition of the term "disability." The Act retains the ADA's basic definition of "disability" as an impairment that substantially limits one or more major life activities; a record of such an impairment; or being regarded as having such an impairment. However, it changes the way that the statutory terms should be interpreted.

Read more about the ADAA in Post-Polio Health (Vol. 24, No. 4).

On Tuesday and Wednesday, January 8 and 9, 2008, in conjunction with Homeland Defense Journal, the National Organization on Disability (www.nod.org) hosted a national conference, dedicated to addressing the emergency preparedness needs of individuals with all types of disabilities. Review the prepared remarks of Justice Department representatives, discussing the issue on a panel entitled "ADA Guidelines from the U.S. Department of Justice on Sheltering for Mass Care."

Disability: Definitions

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

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

“Major life activities” 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.

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.

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.”

Organizations

PHI encourages its Members to network with the following organizations on issues related to disability.

The National Council on Disability (NCD) is an independent federal agency and is composed of 15 members appointed by the President, by and with the advice and consent of the Senate. It provides advice to the President, Congress and executive branch agencies to promote policies, regardless of the nature or severity of the disability and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

American Association of People with Disabilities (AAPD) is the largest nonprofit cross-disability member organization in the USA, dedicated to ensuring economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities. AAPD works in coalition with other disability organizations for the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act (ADA) of 1990 and the Rehabilitation Act of 1973.

Resources

PHI recommends these links to trusted advocacy resources.

Consumer Directed Services, a Consumer Directed Personal Assistance Program (CDPAP) advocacy organization in the NY Metro area. This website has a resource section with a collection of useful links to CDPAP and related organizations. Also links to documents outlining the history of the CDPAP, providing information about program alternatives, offering a scientific assessment of the program, and directing the reader to related topics that may prove useful to a consumer or a program organizer. To assist consumers (in the New York Metro area) with their core responsibility, Consumer Directed Services has developed a consumer/employment service program that should help them find the personal assistant of their choice.