Independent Living Concepts
& International Ventilator Users Network (IVUN) History

Joan L. Headley, Executive Director, Gazette International Networking Institute, St. Louis, MO.

Presented at JIVD’s 8th International Conference on Home Mechanical Ventilation,
March 8, 2001, Lyon, France

[The full presentation with additional graphics, but without the text below (PDF, 2.25 MB), made by converting her Powerpoint presentation to PDF.]

In its relatively short worldwide existence, the independent living movement has designated two distinguished American women as its grandmothers.

One was Mary Switzer, the Director of the Office of Vocational Rehabilitation in the United States from the 1950s to the ‘70s. She demonstrated to Congress the financial rewards of turning adults with disabilities into "productive" citizens and "taxpayers." During her tenure and within a 15-year period, dollars for vocational rehabilitation increased 40-fold. An amendment in 1965 included tuition and attendant care for persons with severe disabilities. (Groce, 1992.)

According to Gini Laurie, the other grandmother of the independent living movement and the founder of our organization, Mary Switzer's role was vital because the vocational rehabilitation monies created an opportunity for students with disabilities to attend college and that, in turn, resulted in an educated leadership.

Why is Gini Laurie considered one of the grandmothers of the independent living movement? Why did she get involved with disability?

Quoting Laurie:

"My father was a surgeon and on staff at St. John's Hospital in St. Louis, Missouri. In 1912, the year before I was born, four siblings were struck by polio: a 12-year-old sister was mildly disabled, a 6-year-old brother significantly disabled, and two sisters, aged 3 and 9, died within days of each other at St. John's. In their memory, my mother painted a mural on the ceiling of the hospital chapel depicting them as angels. Sixteen years later, I watched my brother die of pneumonia and underventilation at St. John's. His funeral mass was in the Chapel, underneath the mural of our sisters."

Because of her family experience, she said it was “only natural” for her to become a Red Cross volunteer at one of the 15 polio respiratory centers operating in the late 1950s by the March of Dimes. The centers, where individuals with severe polio in need of rocking beds and iron lungs were sent, provided superb medical and psychological rehabilitation but, until 1953, most of the fulltime ventilator users seemed doomed to remain in the hospital for the rest of their lives.

In order to save money by avoiding lifelong hospitalization at the then high daily rate of $37, Rancho Los Amigos Respiratory Center for Poliomyelitis in California, pioneered a system of home care that cost only $10 a day and polio survivors were sent home with their iron lungs and chest cuirasses.

Meanwhile, Gini Laurie volunteered at the Toomey Pavilion Respiratory Center at Cleveland, Ohio’s City Hospital, and stayed connected with her old polio pals who had gone home. Reflecting in her later years, Gini commented that it was apparent the polio survivors had two vital needs - people and information. They wanted to keep up with each other and to share information about their lives and equipment." In 1958, she started publishing Toomey j Gazette, and featuring news of how polio survivors managed at home.

By 1959, the vaccines had effectively stopped the huge epidemics in the United States, the public stopped giving to the March of Dimes, and the March of Dimes stopped paying for attendants, and they closed the respiratory centers.

The sudden loss of attendant payments caused panic. There was no Social Security Disability, no Medicare, no Medicaid, and no vocational rehabilitation. There was only welfare or help from churches or family.

Through the Toomey j Gazette, Gini, in 1959, encouraged survivors in every state to write to their congressmen urging national attendant care legislation. The national campaign was unsuccessful, but the campaign did bring the needs of ventilator users to the attention of the leaders in Washington DC.

The United States today still does not have a comprehensive national attendant care program. Advocates continue to focus their efforts on legislation that would mandate states to provide the option of attendant care so individuals with significant disabilities can live at home.

The 1959 campaign for national attendant care demonstrated and solidified Gini's belief in networking -- the power of connecting people with people and the power of information. This networking philosophy is still the foundation of our work today.

International Ventilator Users Network (IVUN) links ventilator users with each other and with health care professionals interested in the options available for mechanical ventilation and home care. Ventilator equipment manufacturers are also a vital part of IVUN.

IVUN advocates for home care and long-term ventilation by providing information through its quarterly newsletter, IVUN News, edited by Judith R. Fischer. IVUN also compiles and maintains the IVUN Resource Directory that has been described by ventilator users as a “gold mine.”

After Mary Switzer and Gini Laurie, the leader of the next generation was Ed Roberts. Ed shared his philosophy with Gini Laurie in a letter in 1970. "I am tired of well-meaning non-cripples, with their stereotypes of what I can and cannot do, directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the start of something big ... CRIPPLE POWER." While his terminology would not be acceptable today, his sentiment is the cornerstone of the independent living philosophy.

Ed Roberts, a ventilator assisted quadriplegic due to polio, traveled throughout the world. Ed, assisted in his advocacy by his mother, became the first severely disabled student at the University of California at Berkeley in 1962. His iron lung would not fit in the dormitory room, so he lived at the student health center and was joined, in 1963, by John Hessler, a quadriplegic from a spinal cord injury. Ed, John, Hale Zukas, and others started the Physically Disabled Students Program at Berkeley in 1970. They were involved in the establishment of the Center for Independent Living in Berkeley in 1972. It should be noted, also, that in 1972, Threshold, an independent living center, began operations in Helsinki, Finland. (Brown, 2000.)

To be clear, independent living centers are not places to live. They are offices that espouse the independent living philosophy. In the states, fifty-one percent of the individuals on the Boards of Directors must have a disability. Each center must offer what is known as the “core services.”

The core services, many of which are being discussed in these sessions, include:

Information and Referral. The centers maintain files on housing, transportation, employment, personal assistance services, interpreters, etc.

Independent Living Skills Training. These courses may include training in using transportation, managing a budget, dealing with insensitive behavior from the public, supervision of attendants, etc.

Peer Counseling. The centers provide people with disabilities who have successfully managed situations, or peers, to assist others in doing the same.

Advocacy. Centers provide two types of advocacy. Individual advocacy involves the one on one work of a staff person and a person with a disability to obtain the support services needed from other agencies. Community advocacy involves efforts to produce changes, for example, in legislation and/or policy, to make it easier for all people with disabilities to live independently.

The independent living movement and disability rights were created in the atmosphere of five other movements during the 60s and 70s. (DeJong, 1978.)

Civil Rights Movement

The civil rights movement for racial minorities made people with disabilities aware of the fact that their rights were being denied. People with disabilities also learned that securing those rights could involve social protest, such as demonstrations and sit-ins. Just as the African American movement learned that they must fight racism; the independent living movement has learned that the prejudice against disability is rooted in society’s attitudes about youth and beauty and the fear many individuals have about their own vulnerability to having a disability.

The awareness of civil rights during the ‘60s and ‘70s was not limited to the US. There was a worldwide awakening to the human rights of individuals with disabilities as evidenced by the United Nations’ Declaration on the Rights of Mentally Retarded Persons (December, 1971) and the Declaration on the Rights of Disabled Persons (December, 1975). These documents recognized that disabled persons were entitled to the same political and civil right as others. Source: …. (1997).“The United Nations and Disabled Persons: The First 50 Years.” Disabled Persons Bulletin, Special Issue (2).

Consumerism

Personified by the work of American Ralph Nader, consumerism is based in a distrust of the seller or service provider. Consequently, it is up to the consumer to be informed about products and services.

This concept, of a person with a disability as a consumer, was counter to the standard practice of professionals making decisions for the disabled person.

Self-Help Movement

At the same time, distrust in professionally dominated services also developed. Self-help organizations sprang up to assist people with disabilities to exercise control over their own lives by providing knowledge and by promoting awareness. Individuals with disabilities, who are institutionalized or who were raised in a sheltered and paternalistic environment, are being made aware of their right to and the possibility of living independently.

Demedicalization

Demedicalization is basic to the independent living philosophy in that it removes the individual from the “sick role.” In the sick role one is exempted from responsibility and one is expected to be cured. The medical model locates the problem in the individual and attempts are made to “fix” the problem. The independent living model locates the problem in the environment.

Ventilator user Kalle Konkola, from Finland, expresses the idea this way. “When I confronted steps before in my wheelchair, I would get angry at myself, now I get angry at the steps.”

If a person cannot be cured, they are susceptible to assuming the “impaired role” losing the status of full citizenship and developing a child-like dependency.

Ventilator user Adolf Ratzka, from Sweden, points out that the family and community have a much more powerful role in non-industrialized countries than in the individualistic West. In cultures where most people live with their families until they marry, the word independent can have an undesirable connotation. But the themes of self-care, peer support, empowerment of the individual, and taking one’s rightful place within the family and community does appeal to people who are forgotten or treated as children. (Ratzka, 1998.)

Because a disability many times is permanent, advocates for independent living feel that management of their disability, after the acute stage, is a personal matter and only secondarily a medical matter. Ventilator user Audrey King, from Canada, has remarked “A very big problem with traditional rehabilitation, from the point of view of the experienced disabled, is that in their “zeal” to be helpful they don’t know when to stop!” (King and Staub, 1983.)

Deinstititionalization

The best-known deinstitutionalization effort during the ‘60s and ‘70s was within the mental health community.

Some postulate that deinsititutionalization for the physically disabled came later because their disability is harder to conceal, and they require more costly architectural modifications. The argument for deinstitutionalization is one of cost-savings to the taxpayer. Many times these savings are offset, however, by the institution’s continued efforts to fill its beds.

Advocates in the States are focused on moving people with disabilities from nursing homes to their own homes. However, the goal is not universal. As Adolf Ratzka states, “Liberating our brothers and sisters from institutions is not a strong argument in places where institutions hardly exist.” (Ratzka, 1998.)

The concept of normalization is related to deinstitutionalization. Early on, being “normal,” emphasized the fact that independent living allows the individual the dignity to take risks, make choices, and the recognition that those choices may lead to failure. Later on, professionals co-opted the terms “normalization” and “integration,” so people with disabilities, or consumers, now prefer “right to difference” and “equalization of opportunities.” (Berman, 1996.)

Lastly, the independent living movement was also influenced by the needs and advocacy of the disabled and the elderly who lived longer due to medical advances, and by the veterans who survived World War II, the Korean Conflict, and the Vietnam War.

What is independent living?

“Control over one’s life based on the choice of acceptable options that minimize reliance on others in making decisions and in performing everyday activities” is the definition used in the document “Toward Independence” created in 1986 by the National Council on the Handicapped as a report to then President Reagan and the Congress of the United States. This document was the foundation for the grassroots advocacy for the eventual passage of the Americans with Disabilities Act (1990). [National Council on the Handicapped (Disability), 1983.]

Rosangela Berman Bieler, now President of Inter-American Institute on Disability (IID), conducted the Latin American Independent Living Survey in which individuals offered several definitions. (Berman, 1996.)

“Independent living is a lifestyle, with possibilities and limitations common to everyone.” Argentina

“Independent living is an individual or group attitude against the strategies of protection that generates dependence and passiveness.” Columbia

“When people with disabilities can live on their own, with the same rights and responsibilities of others.” Venezuela

“Independent living alludes to the fact that people with disabilities are a strategic part of their own development and that their participation is vital for the enrichment of society. Therefore, all necessary resources to acquire the same opportunities as other members of the community must be made available to them.” Mexico

Berman Bieler’s 1996 report pointed out that people with disabilities realize that in some countries disability issues are not a priority because poverty, illiteracy, and hunger are.

She also noted that some misuse the concept of independent living to mean “doing every thing by oneself.”

“People that ‘in spite of’ their disabilities, are able to live by themselves or with little help from others.” Argentina

An article in the most recent Asia Pacific Disability Rehabilitation Journal (Vol. 12, No. 1, 2001) comments that “independent living is a western concept that has not achieved acceptance in developing countries due to its emphasis on individuality and self-sufficiency, and its lack of consideration of family and cultural norms.” The article describes a culturally appropriate form of independent living.

Adolescent women with disabilities from a rural area of India were brought to the city to “live independently as a group” and were compared to others who remained with their parents. Those living in a group developed practical and independent living skills.

One reported that at home she was overprotected and was not allowed to even get herself a cup of coffee. Her father would scold her brothers’ wives for not assisting her. (Boyce, et al., 2001.)

In 1997, ventilator user Kimiyo Satoh, from Japan, decided to attend our Seventh International Post-Polio and Independent Living Conference in St. Louis, Missouri. To raise funds for her self and three attendants to attend, Kimiyo’s efforts caught the attention of the press. The first question I was asked by the reporter who accompanied them on the trip was, “How can this be considered independent living? She has three people, and a husband, to attend to her.” The answer, of course, is that Kimiyo is living independently because she decides when she wakes up in the morning, what she eats and when, and whether she attends a baseball game.

Judith Heumann, co-founder of the World Institute on Disability (WID) expresses this concept by saying. “Independence does not mean doing things physically alone. It means being able to make independent decisions. It is a mind process not contingent upon a ‘normal’ body.” (Pfluger, 1977.)

Gini Laurie said in 1988, “I prefer to think of it as an interdependent living movement rather than an independent living movement." (Laurie, 1988.)

It is hard to deny the many contributions of nondisabled people to the movement. Neither Gini Laurie nor Mary Switzer had a disability. But, leaders are mindful of the fine line between “collaborating and care taking.” The thought has been expressed in the phrase that recurs in disability circles – “Nothing About Us Without Us.”

Polio survivor Henri Charcosset, from Villeurbanne, has proposed another slant on this idea. He suggests we should not think of ourselves as disabled, or we should think that we all have disabilities, because the definition of being disabled is an arbitrary one established by the strongest in our society. (Personal communication.)

All of us know that many people with disabilities, including ventilator users, have not secured the rights and opportunities made available to their nondisabled fellow citizens. All of us, people with and without disabilities, have work to do. We must do this work.

As Spinoza stated, “Men who are good by reason – i.e., men who, under the guidance of reason, seek what is useful to them –desire nothing for themselves they do not also desire for the rest of mankind."

References

Berman Bieler, Rosangela. (1996).”IDEAS 2000 Latin American Independent Living Survey.” International Disability Exchanges and Studies Project. Oakland, CA: World Institute on Disability and New York: Rehabilitation International.

Boyce, E., Boyce, W, Raja, S. (2001) Independent Group Living for Women’s Vocational Training. Asia Pacific Disability Rehabilitation Journal,12, (1), 65.
Brown, Steve. (2000). Freedom of Movement: Independent Living History and Philosophy. Houston, TX: ILRU Bookshelf Series.

Charcosset, H. Personal Communication. 27 February 2001.

DeJong, Gerben. (1978). “The Movement for Independent Living: Origins, Ideology, and Implications for Disability Research.” Paper presented at American Congress of Rehabilitation Medicine.

…. (1997).“The United Nations and Disabled Persons: The First 50 Years.” Disabled Persons Bulletin, Special Issue (2).

Groce, Nora. (1992). The US Role in International Disability Activities: A History and a Look Towards the Future, Oakland, CA: World Institute on Disability, New York: World Rehabilitation Fund, and New York: Rehabilitation International.
Ratzka, A.(1998) “The Independent Living Movement: Is It Living? Is it Moving?” Rehabilitation Gazette, 38, (2), 1.

King, A. and Staub,J. (1983). “The Implications of the Consumer Independent Living Movement on Traditional Rehabilitation.” Paper presented at First Canadian Congress of Rehabilitation, Ottawa, Ontario.

…. (1983). National Policy for Persons with Disabilities. Washington, DC: National Council on the Handicapped (Disability).

Laurie, Gini. (1988). Speech presented to Springfield, Illinois Center for Independent Living Dinner.

Pfluger, Susan Stoddard. (1977). “Independent Living” Washington, DC: Institute for Research Utilization.

---