An International Summit Conference on Independent Living

Washington, DC
September 21-25, 1999
___________

Definitions of Independent Living Worldwide

The Independent Living Movement: A Brief Background

"The IL movement began in the late 1960’s, promoting a philosophy of consumerism, self-direction, self-help, peer service provision, civil rights, self-advocacy, and improved quality of life for people with disabilities. IL programs were developed to provide services to people with significant disabilities who were not satisfied with traditional medical rehabilitation services. IL programs operate from a philosophy of consumer control and involvement in service delivery, peer counseling, advocacy, and the elimination of environmental, physical and social barriers." (Rehab Brief, Vol. XVI, No. 4, U.S. Department of Education, 1994)

According to leading European disability advocates, "People with disabilities ‘woke up’ in different parts of the world simultaneously at the beginning of the 1970’s and the awakening took on different approaches in different countries." (Kalle Konkkola, "Independent Living & Personal Assistant Services in Finland," in Personal Assistance Services in Europe and North America, RI & WID, 1993)

According to U.S. histories of disability advocacy, in 1948 at the University of Illinois the first program was developed for students with significant disabilities. However, it was not until the late 1960’s at the University of California at Berkeley, students with significant disabilities fought for the right to attend university. When these students realized there were few community options available to them after they finished their education, they founded the first Center for Independent Living, in Berkeley in 1972.

Concept of Core Services

In the U.S. in the 1970’s the concept of core services provided in Independent Living Centers (ILCs) grew to include independent living skills training, information and referral, peer support and individual and systems advocacy. Following a period of rapid growth and experimentation, in 1992 standards were developed requiring that IL centers be non-residential, controlled by and staffed by a majority of people with disabilities and represent a cross-disability population (opcit.. As IL evolves and becomes more complex, it must continually assess and address the actual needs of people with disabilities in the communities which are served or not served by disability organizations and independent living centers all over the world (Acton, 1982).

What does "independent living" mean?

The concept of independent living seems to be fairly well understood in North America. But misunderstandings can still occur, as "independent living" can be used to describe (and name) a social movement of people with disabilities (much like the women's movement), or can refer to organizations or services (similar to women's centers or transition houses). Independent living can also refer to the underlying principles and theory behind the movement's actions and the delivered services (similar to feminism). The academics of disability studies now use "social model" to refer to a particular approach to researching and understanding the lives of people with disabilities, which has a striking resemblance to the more grassroots term "independent living."

In many other regions of the globe, however, it is not a safe assumption that the term IL will be understood. This paper will describe some of the different interpretations of the IL concept.

Results of international surveys on meaning of IL

The following descriptions of variations of independent living are based primarily on work conducted by IDEAS 2000 Fellows through an international survey developed in 1995 and distributed 1995-1998. Five hundred surveys were distributed and 171 were completed, representing 54 countries. Generally, substitute terms were used in different languages to reflect the local or regional meaning of what North Americans call "independent living." To some degree, variations in definitions can be correlated to socioeconomic and cultural contexts of the countries responding to the surveys.

A Universal Definition of IL?

In search of IL definitions that were free of cultural priorities and regional restrictions, the following three seem to offer the greatest latitude:

From the USA:

"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. This includes managing one’s affairs, participating in day-to-day life in the community, fulfilling a range of social roles, making decisions that lead to self-determination, and minimizing physical or psychological dependence on others.

"Independent Living Movement: The process of translating into reality the theory that, given appropriate supportive services, accessible environments, and pertinent information and skills, severely disabled individuals can actively participate in all aspects of society.

"Independent Living Program: A community-based program that has substantial consumer involvement. It provides direct or indirect services necessary to assist severely disabled individuals to increase self-determination and minimize unnecessary dependence on others." (Frieden, Richards, Cole & Bailey, 1979)

From Sweden:

"Independent Living means that we demand the same choices and control of 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 abilities, start families of our own. Just as everybody else, we need to be in charge of our lives, think and speak for ourselves." (Adolf Ratzka, www.independentliving.org)

And, from Asia:

"Independent living means living just like everyone else – having opportunities to make decisions that affect one's life, being able to pursue activities of one's own choosing – limited only in the same way that one's non-disabled neighbors are limited. Independent Living should not be defined in terms of living on one's own. Independent living has to do with self-determination. It is having the right and the opportunity to pursue a course of action. And it is the freedom to fail – and to learn from one's failures – just as non-disabled people do." (Manual of Self-Help Organizations, United Nations Economic and Social Commission for Asia and the Pacific, Bangkok, 1991:13)

Independent Living– Choice and Inclusion

In a review of the literature and in the results of the IDEAS survey, the language used to describe independent living around the world varied more than the actual meanings. Many countries had similar approaches, yet there was also distinct variation within countries. Ultimately, this contributes to a philosophy of self-determination – that independent living is what you decide it is. While sharing the underlying goal of equality and inclusion for people with disabilities, the following four categories describe the major differences between definitions of independent living expressed in the IDEAS surveys in Latin America, Europe, Asia, and Africa.

a) Self-direction: "Being able to make decisions"

The first category included definitions that focus on the right to decide or direct one’s own life. Most often this definition also included a sense of inherent civil or human rights which pointed to the universality of self-determination.

Karen Ngai from the Rehabilitation Alliance in Hong Kong said that IL is "Self-help organizations, cross disability groups and having equal opportunities like other people do; we believe we should make our own choices" (Lysack, 1996: 10).

"Freedom to make our own choices" was a definition offered from Holland.

A consumer from Japan defined IL as "self-determination and self control" (Lysack, 1996: 7).

In her IDEAS 2000 Fellowship research Rosangela Berman-Bieler reported that a respondent to the IL survey from Brazil suggested that: "it is the right of the individual with a disability to decide about her or his own life even when there is a need for someone else to assist with daily life activities" (Berman-Bieler, 1997: 30).

In Lynita Conradie's Fellowship report she noted that a person from Zimbabwe felt IL is the "right to make one’s own decisions and the right to autonomy" (Conradie, 1997: 9).

"In Germany we… have chosen the term Self-Determined Living…instead of independent living," to avoid confusion about whether we are talking about all disabled people living alone. (Uwe Frehse, "Personal Assistance Systems in Germany," in Personal Assistance Services in Europe and North America, p. 21, RI & WID, 1993)

b) Empowerment: "Living to one's fullest potential"

While responses in this category were similar, they reflected a different approach to independent living. These individuals identified the ability to develop one’s full potential as central to the concept.

A comment in the survey from Germany suggested that independent living was "self-awareness and self-acceptance, and the ability to satisfy basic economic needs" (Lysack, 1996: 7).

In Argentina a respondent felt "IL is the process through which a person with a disability …is able to take control over all aspects of her or his life and to be responsible for her or his decisions and their consequences" (Berman-Bieler, 1997: 29).

Another comment from Brazil was that IL "expresses the notion of empowerment of disabled persons. This concept challenges the traditional paternalistic and authoritarian posture of society and of the institutions that provide services" (Berman-Bieler, 1997: 30).

c) Not being dependent: "Not needing help from others"

Responses in this category were commonly received from people in developing countries. The concept of independent living was tied directly to 'not being dependent' and the ability to live without needing the help of others. While similar in some ways to self-direction, these answers focussed particularly on "not needing" or "living without" help from others. This reflects the significant level of dependence that many people with disabilities experience in countries with significant cultural and economic barriers.

A person from Uganda responded that IL is "the ability to live our own lives economically, politically, and socially without having to depend on others for a meaningful life" (Lysack, 1996: 7).

From Argentina came the interpretation that IL means "people that in spite of their disabilities are able to live by themselves or with little help from others" (Berman-Bieler, 1997: 29).

Similarly, a response from Spain suggested that IL means "no dependence in daily life activities such as feeding or dressing, and going places by her or himself without anyone's assistance" (Berman-Bieler, 1997: 32).

A respondent from Cape Verde replied that IL "is the integration of a disabled individual in work and family life without having to totally depend on others" (Berman-Bieler, 1997: 33).

The Kenyan response was that IL means "living on one’s own, and doing things for oneself with minimal or no assistance" (Conradie, 1997: 9).

d) Interdependence: "it's not about independence anymore: the new paradigm of IL"

As expected in conducting research, new ideas emerge. A new paradigm has resulted from the synergistic effect of the exposure of many individuals to international conferences and documents, but also the evolution of a movement over 30 years. This new paradigm re-frames independence as "inter-dependence" and recognizes that living with others or needing assistance might be part of the process of empowerment. This model of independent living was the least frequently cited but, but seems to capture a new approach.

A representative from India at the 1995 Jakarta conference of the Rehabilitation International Asia/Pacific region felt "there is widespread misperception about independent living in Asia that it means living alone." He stated "that inter-dependent living might be a more accurate description of how all people live, be they disabled or not" (Samir Ghosh, quoted by Lysack, 1995:9).

Andre Soewardjo of Indonesia reported that independent living had at least two components: "Internal and external: the internal is the conscious desire to grow to your potential. [The] external is family, society, and government" (Soewardjo, quoted by Lysack, 1995: 6).

One of the respondents from Italy compared IL to other people's freedom to live; independent living means "reaching the same degree of freedom as enjoyed by one's non-disabled peers. It does not mean that you are living on your own, but that you have control where you live and the same range of choices as non-disabled people" (Lysack, 1995: 7).

A survey response from Colombia stated "it is the possibility for people with disabilities to participate actively as decision makers and develop themselves through mutual assistance process that gives disabled people social and economic tools to turn them into active members of their communities on equal footing with others" (Berman-Bieler, 1997: 30).

Another response from an advocate in Peru suggested that "Independent Living (social integration) is the process through which the disabled person participate actively, in the same way as others, exercises their rights and assumes responsibilities for the construction of a better society, in fairness and solidarity"(Berman-Bieler, 1997: 31).

Commentary on Definitions

All of these definitions of independent living recognize that social problems do not stem from the disabilities of the individual but from the failure of society to meet the needs of all its members. This is one of the primary tenets of the independent living philosophy– that the disabling condition is not the primary problem. Despite the fact that the definitions were taken from different sources and countries, and in different years, there is more agreement than contradiction. The way people describe independence will have a direct impact on how they measure achieving it, how they work towards implementing it, and how society deals with the demand for it. It also affects where resources are directed and thus is central to the securing of independent living services (Batvia, DeJong and McKnew, 1991).

Under the independent living paradigm, and particularly looking at the more recent inter-dependence paradigm, there is a growing understanding that people with disabilities are part of a larger community and that the larger community, and those marginalized from it, need to work together to achieve full participation. (Racino, 1995; Roberts, 1985 and Simkins, 1979)

Among the most important issues that we will face in the 21^st century are the rediscovery of community and the realization that we are not able to live isolated from each other; that we are all interdependent.

References

Acton, N. "The World’s Response to Disabled: Evaluation of a Philosophy" Archives of Physical Medicine and Rehabilitation 63 (1982)

Batavia, A. I., G. DeJong, and L. B. McKnew. "Toward a National Personal Assistance Program: the Independent Living Model of Long-Term Care for Persons With Disabilities." Journal of Health Politics, Policy and Law 16.3 (1991): 523-45.

Berman-Bieler, R. "IDEAS 2000: Latin American Independent Living Survey." WID/RI IDEAS 2000 Fellowship (1996).

Conradie, L. "Brief Overview of Disability in South Africa." WID/RI IDEAS 2000 Fellowship (1997).

Doe, T. "Cultural Variations of Independent Living: An International Review," WID/RI IDEAS 2000 Fellowship (1999).

Economic and Social Council for Asia and Pacific, Manual of Self-Help Organizations of Disabled Persons, United Nations (1991).

Frehse, Uwe "Personal Assistance Systems in Germany," in Personal Assistance Services in Europe and North America: Report of an International Symposium, WID/RI (1993), p. 21.

Frieden, Richards, Cole & Bailey, ILRU Sourcebook: Technical Assistance Manual on Independent Living, ILRU, Houston (1979)

"Independent Living Research." Rehab Brief, Vol. XVI, No. 4, 1994, U.S. Department of Education.

Konkkola, K. "Independent Living & Personal Assistant Services in Finland," in Personal Assistance Services in Europe and North America: Report of an International Symposium, WID/RI (1993).

Levy, C. A People’s History of the Independent Living Movement. Research and Training Center on Independent Living: University of Kansas (1988).

Lysack, C. "Asia and Pacific Adaptations of Independent Living and Community Based Rehabilitation," WID/RI IDEAS 2000 Fellowship (1995).

Lysack, C. "IDEAS 2000 Independent Living Survey: International Findings." WID/RI IDEAS 2000 Fellowship (1996).

Manual of Self-Help Organizations, United Nations Economic and Social Commission for Asia and the Pacific, Bangkok, (1991):13

Racino, J. A. "Personal Assistance and Personal Support Services for/by/With Adults, Youth and Children With Disabilities." Journal of Vocational Rehabilitation 5.3 (1995): 205-.

Ratzka, Adolf "What is Independent Living/A Personal Definition" www.independentliving.org

Roberts, E.V. "Independent Living Movement Promotes Self-Determination for Disabled Individuals." Mainstream (1985): 23-27, 50.

Simkins, J. The Value of Independent Living: Looking at Cost-Effectiveness in the UK. New York: World Rehabilitation Fund, (1979).