The History of the Independent Living Movement

The oddest thing about the idea of Independent living is that it doesn't mean living independently. It has nothing to do with being able to function without assistance. Independent living is about controlling one's own life, having the freedom to make decisions about where and how to live, work, and play..

Obviously, no one has their own way in everything. All human beings must make some compromises in their lives but people with disabilities shouldn't have to make those compromises only because of their disability just as minority groups should not to be expected to accept less freedom because of their race, religion, sex, or personal lifestyle. America has long recognized this. Legislation has been enacted to guarantee these freedoms. Unfortunately, it took America a little longer to get around to acknowledging the presence of the broadest minority group of all.

People with disabilities cross lines of ethnic origin, age, income, and nationality as well as the more obvious ones of race, religion, and sex. We are the largest and most vaguely defined "minority" group in the world and our ranks are growing every day

Perhaps, this is part of the reason it's taken the United States so long to grant freedom to us. How does one go about deciding exactly who is disabled and how should they live? The question is easily answered. Ask the person with the disability. We know.

The problem has been, and often still is, that those without disabilities feel compelled to make decisions for us. The history of educating these "decisionmakers" and empowering ourselves is the story of the independent living movement.

People with disabilities have been around as long as people have. (Although, I'm sure it seems to some that the disabled simply sprung up about 60 years ago.) For the most part, they lived with their families or were quietly shepherded into institutions, never to be heard from or spoken about.

The 20th century advances in medicine, technology, and income changed that. Both those born with disabilities or who acquired them through injury or disease began to survive. So, for practical purposes, most consider that the independent living movement began after World War II.

The first part of the last century saw the advent of improved emergency medical techniques, (It is a sad but true fact of our world that each war brings with it the need to develop better battlefield medicine.

All those requiring emergency treatment afterward benefit from these wartime lessons.), antibiotics, a host of World War II veterans with acquired disabilities, and a large number of polio survivors. It is the veterans and the polio "victims" who first start organizing; informally at first but publishing newsletters and forming support networks all the same.

Next came a series of social revolutions that, while not always directly affecting those with disabilities, help shape the American consciousness. Hands-down, the civil rights movement of the 1960s had the strongest influence. Although primarily targeting African-Americans, the movement forced people to examine their preconceptions about everyone.

Freedom, particularly personal freedom in social and civil matters received intense scrutiny and reevaluation. The civil rights movement began to encompass the poor, immigrants, and all the disenfranchised. People with disabilities benefited. Attitudes and expectations began to change.

Almost at the same time, the social movements of deinstitutionalization, demedicalization, consumerism, and self-help emerged. Medicine advanced to the point that many disabilities became manageable outside of an institution.  There was a real push to move people with developmental disabilities from medical environments into the community.  This is known as deinstitutionalization.  A very long word for the beginning of freedom.

Demedicalization, another long word for simple idea, held that people should be treated as a whole person not just a sum of bits and pieces.  Emotional health, spiritual health, and physical health needed to be considered for all individuals.  Treatment should never be based on medical considerations only.  Taken together, these two ideas resulted in great efforts to "allow" some people with disabilities to live in more "normal" circumstances.

Consumerism, the idea that we should be informed about our own medical treatment and options and the self-help movement which pushed people to empower themselves came together in the trend to move away from strict medical solutions for people with disabilities to create the independent living philosophy.

Eureka!  Perhaps, just perhaps, people with disabilities should make their own decisions about their lives.  Freedom should not depend on physical or cognitive independence.  In the late 1960s, small groups of disabled folk from several major cities came to the same conclusion.  It started slowly, most of them were informal but some did organize.

The very first Independent Living Center (link at bottom of page) was started at Berkeley in 1970. Other organizations sprung up as well. Groups working for better transportation, housing, education, and, most importantly, the right to live as we choose without discrimination.

The difference between an independent living Center (ILC) and all of the organizations that had come before was that this organization was controlled by people with disabilities. Their mission was to assist people like themselves in empowering themselves. In retrospect, things moved along quickly after the first ILC although I'm sure it did not seem so to many in the movement.

The Rehabilitation Act of 1973 prohibited discrimination in federal programs and services as well as all other programs or services that receive federal funding.

The Individuals With Disabilities Education Act which provides for a free appropriate public education in the least restrictive environment possible for all children with disabilities was signed into law in 1975.

Amendments to the Rehabilitation Act in 1978 called for the establishment of consumer controlled centers for independent living. More amendments in 1983 required an advocacy program for consumers of rehabilitation and independent living services (CAP).

In 1985, The Mental Illness Bill Of Rights Act required protection and advocacy services for people with mental illness. The Shenandoah Valley Independent Living Center now known as Access Independence was established in 1985 as well.

The Civil Rights Restoration Act of 1988 clarified some problems with the original Rehabilitation Act. It expanded the law to include the prohibition of discrimination in any program or service that is part of an entity that receives federal funding even if the program itself does not.

Also that year, the Fair Housing Amendments Act became law which makes discrimination in housing against people with disabilities or families with children illegal. It also allows renters to make accessibility modifications at their own expense.

The ADA or Americans with Disabilities Act, passed in 1990, gave official civil rights protection to people with disabilities. It was closely modeled on the Civil Rights Act of 1964

Dr. Martin Luther King said in a speech near the time of his death that he'd seen the mountaintop and that he might not get there with his people.  Well, he was right and chances are we might not get there either.  There is still so much that needs to be done for all people with disabilities before we can even begin to think that we have achieved independent living.  Even so, progress has been made.

As with the Civil Rights Movement, the Independent Living Movement depends on people with disabilities empowering themselves and refusing to be denied their rights and freedom.

Picture one is Doris Marens Konover at Cushing Hospital, Farmington 1946, Picture two is Photograph of President Lyndon Johnson Signs the Voting Rights Act as Martin Luther King, Jr., with Other Civil Rights Leaders in the Capitol Rotunda, Washington, DC, 08/06/1965