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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 focused 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 21st 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.

Note: This paper was developed by Tanis Doe, Ph.D., who served as the 1998 Independent Living Research Fellow for the World Institute on Disability and Rehabilitation International, funded by the NIDRR grant, International Disability Exchanges and Studies 2000. Doe reviewed definitions collected by other IDEAS researchers 1995-97, as well as those derived from the literature. Barbara Duncan of Rehabilitation International, and Susan Brown, WID consultant, edited and added to the material.

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