the sense of independence
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
‘this presentation discusses the factors that contribute to a person’s sense of being an
independent individual who can engage in meaningful relationships and participate in their
local community. it focuses on the personal accounts and experiences of disabled and older
people in terms of maintaining their independence’
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
no one can define independence for another, it’s a personal construct. but there are some
constituents upon which the majority of people agree.
wishes
old disabled people
-interdependence with family, friends and
others
-retain involvement in aspects of their lives
which have always been important to them
old non-disabled people
-interdependence with family, friends and
others
-retain involvement in aspects of their lives
which have always been important to them
wishes
young disabled people
-participation
-unfettered access to schools, jobs,
transport, houses, leisure,…
young non-disabled people
-participation
-unfettered access to schools, jobs,
transport, houses, leisure,…
reality
‘non-disabled people take things for granted, disabled people are expected to make do with
half right solutions and be grateful’ (Fincham)
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
perception towards independence of disabled people
disabled people
non-disabled people
with the necessary support, push themselves
to the limit – whatever those limits happen to
be
not taking part in these activities without
support, so they are not independent
this crash of perception often denies disabled people the opportunity to take part in everyday
life. disabled people are not incompetent and should not have low expectations of themselves
and others. intervention is therefore necessary.
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
the perception that people who need support, are not independent, is of course wrong.
support is a tool that provides disabled people to participate in all aspects of daily life.
Irving Zola, medical sociologist and disability activist, talked about his own experience of living
with impairments:
’the striving for independence is a …hallmark in the rehabilitation literature. but… the key
seems to be who is defining what is independent.
i was always told to push myself to the maximum of my physical capability… for me this meant
travelling like everybody else. i parked my car and walked, even in the freezing cold. i was
exhausted and cramped, but i reached my destination… it took me five times as long.
at first people joined me, but after a while fewer and fewer people wished to walk my pace.
So, either through my embarrassment or theirs, i eventually went earlier or alone or not at all.
this affected my life until my late 30s. i omitted many activities that required considerable
walking or where my slowness impeded the activity. i stopped visiting museums, going on
tours, or attending large public events.
no one ever suggested me to use a wheelchair, not even orthopaedists and prosthetists.
by changing my perception of independence, i could pick back up my old life. by trying to live
according to someone else’s definition of physical independence, i contributed to the demise
of my own social and psychological independence.’
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
the understanding of independence is very subjective and alters during the experience of
disability.
experience of disability for:
people with an acquired disability (accidental)
2 phases:
phase 1: time in which these people strive to get better and improve physical
prowess and their ability to manage personal care. they are seeking to
restore the balance in their life after a devastating event through products
and services concerning rehabilitation, illness and vulnerability.
point of transition
phase 2: time of recognition in which they realise that the quality of life no longer
lies in their rehab, but in issues as lifestyle, expectations and
interdependence and their role to provide a sense of independence
people with a gradually increasing disability (due to aging)
these people expect to continue purchasing and using the same products and services they
have always purchased and used, but want these to take account of their changing needs.
independence is about being able to depend on others and on having dependable
services, so that they could fulfil their ambition to be unpredictable and individual in
their own actions
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
maintaining roles and relationships with others
contributing to the welfare of others
engaging in leisure / activities which are fun
managing life including work
taking risks
interaction between people is a significant source of satisfaction and contributes to the
experience of well-being and self perception of independence. it is important for all ages
in order to maintain interaction some demands have to be met, some needs fulfilled
-being able to communicate
-need to express opinions and ideas about external events, unrelated to one’s own personal
circumstances
-being able to switch off from caring responsibilities or the daily environmental challenge
-being part of something is as important as participating in activities
-the desire to look good
-desire to maintain physical proximity to others
problems arise, a lot of factors keep disabled and older people from maintaining interaction
-the assumption that disabled people do not participate in the same range of activities as nondisabled people
-fashion buyers do not perceive disabled people as potential customers
-interiors are inaccessible or not functionally well designed towards disabled people
-…
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
maintaining roles and relationships with others
contributing to the welfare of others
engaging in leisure / activities which are fun
managing life including work
taking risks
relationships are not simply about family affection and friendship, they provide opportunities to
make a contribution to other people’s welfare. there’s a need to be dependable in relationship
to others
‘it’s so important to be able to do things for other people as well as for yourself. it is a
reciprocal thing: people can help you in and out of the car with your wheelchair, but you’re the
one driving them’
these activities or reciprocal actions van be very small, yet they really make a great difference
to the general feeling.
when these networks and reciprocal actions brake down,
negative feelings such as anger, frustration and sadness emerge
which reduce self esteem
which leads to the demise of the sense of independence
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
maintaining roles and relationships with others
contributing to the welfare of others
engaging in leisure / activities which are fun
managing life including work
taking risks
disabled people want balance in life. engaging in leisure and activities which are fun gives a
sense of involvement in life and fulfil four main purposes:
-replace a previously values activity such as a sport
-provide the opportunity to do something different and develop dormant skills and interests
-develop a different aspect of a previous activity
-provide structure and purpose to the day
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
maintaining roles and relationships with others
contributing to the welfare of others
engaging in leisure / activities which are fun
managing life including work
taking risks
work is of a great importance to disabled people: it creates an opportunity to maintain roles
and relationships with and contribute to the welfare of others.
problems
-to much interference in the work of a disabled person: lack of trust
-poor employer attitudes and lack of flexibility and imagination
-the work floor is not well designed
disabled people in work do not highlight their problems to employers until a crisis point is
reached and their job is at stake
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
maintaining roles and relationships with others
contributing to the welfare of others
engaging in leisure / activities which are fun
managing life including work
taking risks
being trusted to take risks is crucial as well. all risk taking has to be balanced against the risk
to other people. disabled people are capable to do things that might look too risky and they
should be able to prove it too.
good insurance is a plus
the sense of independence
intro
independence 4 whom
key elements of independence
new life, new needs
jump to conclusions
defining independence
‘independence’ is an infinitely variable self concept, depending on the personal experience of
the barriers existing in the environments encountered. the term ‘independence’ covers a
complex collection of factors and feelings. when any one of these is disrupted or missing, an
overwhelming sense of dependence arises. exclusion from mainstream activity, special
provision and dependence on unreliable services are the main factors that also bring forth a
sense of dependence.
a change of perception towards disabled people is the primary objective that will make
it easier for these people to take part in everyday life. this change will bring forth a
more sensible designing of interior and exterior environments and will create
opportunities for disabled people to participate in activities from which they are now
excluded due to their impairment.