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What Independent Living Means

A Way of Life

Independent Living is a philosophy and a way of life. It is a movement of people with disabilities who work for self-determination, equal opportunities and self-respect. The Independent Living philosophy says that every person, regardless of disability, has the potential and the right to exercise individual self-determination. We expect the same choices and control in our everyday lives that everyone else takes for granted. We want the same freedom to try, and fail, and learn from our failures. 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 abilities, start families of our own. We need to be in charge of our lives, to think and speak for ourselves. We need to support and learn from each other. We must organize ourselves and work for political changes that lead to the legal protection of our human and civil rights. (Adapted from Adolf Ratzka, http://www.independentliving.org)

Our Core Values

The core values embraced by Centers for Independent Living include…

Cross disability…

means all disabilities are included. While the daily details of our disabilities are different, we are all experiencing the same societal barriers and oppression.

Consumer control…

means that the individual with a disability must be able to make his or her own choices, and to be in charge of his or her own life. Consumer control also means that the organizations best suited to assist us are not run by parents, social workers, or medical people, but by us, people who have disabilities.

Self-help and peer support…

means that people learn and grow by discussing their needs, concerns and issues with people who have had similar experiences.

Equal access to society…

means that as barriers are removed and legal rights are honored, society in its broadest sense appreciates and includes people with disabilities in education, employment, housing, recreation, transportation, and all other forms of public and private group activity.

Independent Living Philosophy

The Independent Living (IL) philosophy is very different from the traditional rehabilitation model. The IL philosophy includes the core values discussed above. Its goals for individuals with disabilities are empowerment and self-determination. Its goals for communities are achieving equal access through reducing and removing barriers. The outcome we want is self-determination and full community participation for persons with all disabilities.

The traditional, medical model focuses on what is wrong with the person with a disability, and making efforts to "fix what is broken." In our philosophy, a person with a disability is someone identified as having one or more impairment(s) who has limited choices regarding participation in community life. These choices are limited because of community barriers, low community- and self-expectations, stigma, prejudice, and discrimination. Participation in community life includes getting an education, working, living independently, shopping, worshipping, using public transportation, and political activities. Societal barriers, not the disability itself, are the major reason many people with disabilities have problems living independently. Centers for Independent Living do not "rehabilitate" the person, but instead focus on reducing and removing the barriers that limit our choices.

What is a Center for Independent Living?

Centers for Independent Living were created by the Rehabilitation Act of 1979. There are almost 500 Centers nationwide. They operate a wide variety of programs to address local concerns and priorities. But every Center promotes the Independent Living philosophy and core values discussed above.

Every Center for Independent Living has four core services that they must provide. These are advocacy, peer support, information and referral, and independent living skills training.

Advocacy is working to remove the barriers to independent living and full inclusion in all aspects of community life. Sometimes Centers will advocate for the rights of one person in his or her own community. Sometimes Centers work to achieve change that will benefit thousands or even millions of persons with disabilities all over the state or the nation. This kind of systems change is often achieved through legislative and regulatory advocacy. Systems advocacy focuses on barrier removal and equal access to society.

Peer support is providing the opportunity for people to learn and grow by discussing their needs, concerns and issues with people who have had similar experiences. Sometimes staff will provide the peer support, sometimes individuals will receive their support from another person in the community, and sometimes they will take part in a support group.

Information and referral gives people access to the information and resources they need to make informed choices and get what they need to live independently.

Independent living skills training helps individuals acquire the skills they need to live. Often it will include teaching people how to employ and manage personal assistants, or care for physical needs related to their disability, or how to communicate effectively. Who better than another person with a disability to show someone the "tricks of the trade?"

Other services commonly offered by Centers for Independent Living include…

Personal Assistant recruitment and referral.
Helping persons with disabilities move from nursing homes to their own homes.
Referring sign language interpreters and CART writers.
Services to seniors with vision loss.
Loaning medical equipment.
Raising community awareness of disabilities and disability issues.

History of Independent Living Movement

Historical roots of discrimination…

Many cultures of the world have treated persons with disabilities as having less worth than able-bodied people have. The Spartans left deformed babies to die on the hillsides. Lunatic asylums in Europe, in centuries past, imprisoned people with psychiatric disabilities in appalling conditions. The Nazis systematically killed children and adults with mental retardation, epilepsy, cerebral palsy, and other disabilities.

The United States also has a long history of discrimination against persons with disabilities. In colonial days, when the focus was on survival and building new communities in the wilderness, physical stamina and moral worthiness were considered essential. Dependency of any kind was considered a financial burden. As early as 1751, states began opening almshouses, workhouses, insane asylums, and other institutions for "the support and maintenance of idiots, lunatics, and other persons of unsound minds." In Illinois today, institutional care still takes the lion's share of state funding for services to persons with developmental disabilities.

Civil rights laws…

From 1968 to 1992, a number of laws were created that established certain civil rights for persons with disabilities. These laws addressed architectural barriers, discrimination against persons with disabilities in federally funded programs, education rights for children with disabilities, "Bill of Rights" for persons with developmental disabilities and mental illness, discrimination in housing, consumer control over their own vocational rehabilitation plans, and creation of Centers for Independent Living. Most important among these is the Americans with Disabilities Act of 1990, the civil rights law for all persons with disabilities.

But as any African-American can tell you, the passing of a civil rights law in Washington does not give true freedom and equality and integration without a long struggle. Indeed, our disability rights movement closely mirrors their civil rights movement. In the 1950s, blacks protested because they had to sit in the back of the bus; in the 1970s, people with disabilities protested because they couldn't get on the bus! We, too, are fighting blatant and subtle prejudice, building pride in who we are, and protesting discrimination in non-violent ways.

No pity…

Our world is changing fast. Rapid advances in technology, new civil rights protections, better-educated students with disabilities coming out of "mainstreamed" classrooms, a new group consciousness, and political activism mean more disabled people are seeking jobs and greater daily participation in American life. But prejudice, society's low expectations, and an antiquated welfare and social service system frustrate our attempts at independence. The disability rights movement includes new thinking by people with disabilities that there is no pity or tragedy in disability. It is society's myths, fears, and stereotypes, and the barriers that society creates, that cause the difficulties associated with disability.

One in five…

Did you know that one in five Americans today has a disability? There are over 54 million Americans with disabilities - one in five. We are more numerous than African-Americans or Hispanic-Americans. We are the nation's largest minority!

We are a very diverse group. There are hundreds of different disabilities. Some are present at birth, most are acquired later in life. Some are progressive, like muscular dystrophy. Others, such as epilepsy, are episodic. Multiple sclerosis is episodic and progressive. Some are static, like the loss of a limb. Some, like cancer, can even go away. Some disabilities, like epilepsy or diabetes, are hidden. Some perceived disabilities, such as obesity or stuttering, which are not disabling but create prejudice and discrimination. Each disability comes in differing degrees of severity. For example, hearing loss can range from a mild loss to profound deafness. Some people with autism spend their lives in institutions while others are graduating from college and pursuing professions.

There are more of us then ever before. Advances in medical technology have saved the lives of severely injured people, and allow people with all kinds of medical complications to live longer. Think of wounded soldiers, automobile accidents, premature babies, people with cancer surviving longer. The graying of America expands our ranks, too. One-third of Americans with disabilities are 65 or older.

Disability is the one minority that anyone can join at any time, as a result of a sudden automobile accident, assault, or disease. Fewer than 15% are born with their disabilities. There are no socioeconomic boundaries. You can become disabled from your mother's poor nutrition or addiction to crack, or from falling off your polo pony. And if you live long enough, you are very likely to acquire a disability.

A new movement…

People with disabilities have been a hidden, misunderstood minority, often routinely deprived of the basic life choices that even the most disadvantaged among us take for granted. In the last 20 to 30 years, little noticed alongside the civil rights struggles of African-Americans, women, gays and lesbians, and other minorities, another movement has slowly taken shape to demand for people with disabilities the fundamental rights that have already been granted to all other Americans. It has led to the emergence of a group consciousness, even the start of a disability culture, which did not exist nationally even in the late 1970s.

Our movement is a true mosaic…

There is a disability angle to almost any topic, from access to health care to aging to end-of-life issues, from abortion to prenatal care, from education to work, from civil rights to criminal justice. The disability rights movement is a true mosaic, with diversity as its central characteristic. No one leader or organization can claim to speak for all people with disabilities. Without one highly visible leader, the disability rights movement has gone largely unnoticed by nondisabled people. But by its acceptance of differences, the campaign for disability rights has forged a powerful coalition of millions of people with disabilities, their families and friends.

We're here, we're united, and we're not going away!

Want to know more about the Independent Living movement? LIFE Center has a number of books and articles about the movement in our library. Or press the Links button on the left for links to Internet sites about Independent Living.