Sub-Pages: About
SILC – Hawaii | What Does Independent Living Mean? | Choice & Inclusion
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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