IL History

The IL Movement: A History

In the Beginning

A look at how people with disabilities have been treated by various cultures throughout history, shows how the movement for independent living began. From nomad tribes to social change in the United States during the 1960s, people with disabilities have played various roles in society and cultures. Today, we are experiencing a new age.

Nomads considered people with disabilities useless because they could not contribute to the wealth of the tribe, and often left them to die whenever the tribe moved on to a new location. The Greeks sought rational reasons for disability. Typically, philosophers concluded that diseases like epilepsy were a disturbance of the mind, and that since verbal communication was essential to learning, deaf people could not learn.

Early Christians treated disabled people with sympathy and pity, often feeling superior to them. Many Christians believed that a disability represented an impurity, and that people with disabilities needed to be saved.

With a growing belief in supernaturalism during the Middle Ages, came another attitude steeped in fear. People with disabilities were often ridiculed, and persecuted because society thought the disability represented the manifestation of evil.

Medical care and treatment for people with disabilities were introduced during the Renaissance. For the first time, education was available and they were encouraged to actively participate in their communities.

Early settlers in the American colonies enacted laws to limit the immigration of many people from Europe, including those with disabilities. Often, such individuals were banned from entry into a town because they were believed to be a financial drain on the community. By 1880, almshouses for the poor and for people in need of some human service were opened, and most states and territories had programs for people with disabilities. In most cases, however, this meant that people who were blind, deaf, mentally retarded or otherwise physically disabled were sent to large institutions for their entire lives.

With movement to the western frontier, many Americans began to believe that local initiatives could help to eliminate social ills, and at least some people with disabilities were no longer condemned for not being able to earn their own living. Unfortunately, even as services became available, people with disabilities were often still segregated from mainstream society, and only lived in integrated settings among rural families. The concept of broad scale rehabilitation services was introduced following World War I, when rehabilitation programs were designed for the returning disabled veteran as the need for training or re-training was finally recognized. The first federal program for people with disabilities was called the federal-state vocational rehabilitation system.

No federal legislation seriously considered other major services for people with disabilities until the tide of social changes during the 1960s. Although the Social Security system provided benefits to those who had earned sufficient income over a long enough time and had become disabled, there was no attempt to broaden the base of services to people with other kinds of disabilities beyond the vocational approach. For the first time in America's history, consumers, advocates and service professionals began to examine the network of human services available to see what was missing. Community-based programs began growing all over the nation in an attempt to deal with these missing services, developing new concepts, new technologies and new attitudes.

The Impact of Other Social Movements

Social reform movements during the 1960s and 70s created the necessary atmosphere for the current activities of disability rights advocates and development of centers for independent living. Among these were the Civil Rights Movement, the concepts of consumerism and self-help, and a push for demedicalization and deinstitutionalization of people with disabilities, which were among the most beneficial.

The first Center for Independent Living (CIL), run by and for people with disabilities, was opened in Berkeley, California in the early 1970s. With other CIL developments during that decade, disability rights and independent living concepts soon merged into one movement based upon real accomplishments. The disabilities community joined together to protest their exclusion from society's mainstream and to demand more humane, non-medical attention from the nation's service delivery system.

Their cry reflected many of the same themes as the Civil Rights Movement led by African Americans during the early 1960s. Society was again denying access to basic services and opportunities such as employment, housing, transportation, and education to a portion of its population. Like Rosa Parks, people with disabilities wanted and needed to ride public buses. The only difference was that as a black woman, Rosa Parks was not permitted to sit in the front of the bus, while people with disabilities were being denied the simple choice to get on the bus.

The principles of the consumerism movement, led by well-known national figures like Ralph Nader, encouraged people with disabilities to stress their role as consumers first and patients last. They began to demand the right to learn and to decide for themselves what services and products they needed or wanted. As cases/patients, they had rarely been given the autonomy or power to make their own life choices.

The self-help concept is nothing new in the US, but organized self-help programs are. Strong parallels were drawn between the needs of the disabilities community and basic concepts underlying peer counseling, Alcoholics Anonymous, and other self-help groups. Leaders of the independent living movement asserted that only persons with disabilities know best how to serve and support others with the same or similar disabilities. Demedicalization and deinstitutionalization share certain common themes. Demedicalization means removing the involvement of medical professionals in the daily lives of those who are disabled. People with disabilities are not "sick", they have a disability, and therefore not dependent upon medical professionals for everyday needs. Personal assistance services "demedicalize" a person with a severe mobility impairment. When a consumer can hire, fire, train, and manage his or her own personal assistants as he/she chooses, the service has been demedicalized. By the same token, people who are mentally ill or mentally retarded are not "sick". They do, however, need non-medical personal assistance services or other supports to maintain an acceptable quality of life in the community. Usually, this support can be acquired at a much lesser cost individually, than through the large staffs of medical professionals required in mental health institutions.

The independent living movement is a compilation of these five movements as they pertain to and are defined by people with disabilities. Their energy, dedication and drive are creating a new vision for America based on the principles of equal opportunity and responsibility for all. This vision can be a reality as people from the traditional rehabilitation system and those from the independent living movement come together to make it work.

Much of the content for this article was drawn from a paper "The Movement for Independent Living: A Brief History," by Maggie Shreve, Director of Development and Administration, National Council on Independent Living.