In this blog we will portray the
life in institutions using the there out of five principles of ‘normalisation’
(Brandon 1991), a perspective develop to assess the difference between an
ordinary life live outside the institutions and the institutional life.
Relationships
Most of the people working in the
institution have warm, friendly and loving relationships with the residents
(the employees have a good sense of what can make the residents smile, they
sing together, they hug and laugh). This mostly shows in good humours and openness
of the residents. There is however a clear division between the residents and
staff expressed in clothing (staff mostly wears uniforms), way of addressing
residents[1]
and sometimes in fear that residents demonstrate against the staff. Some of the
staff recognise that demonstration of violent and aggressive behaviour and even
inappropriate sexual behaviour is a sign of protest, personal or interpersonal
difficulties, frustration or a lack of attachment and bonds. They, however,
still treat and respond to these actions mostly in a traditional way by
punishment, coercion and dismay.
In order to counter such
disciplinary relationships and depersonalisation that is bound to occur in
institutional settings[2]
in some institutions efforts were organised to change this. In Mothers
and infants home Bitola, they
have established the system of keyworkers in order to enable each infant to
form a meaningful attachment with a member of the staff. In addition, they have
abandoned the idea of age-homogenous groups. These measures have greatly improved
the work of staff and emotional and developmental state of the babies. In Demir
Kapija, an initiative supported by UNICEF, recently introduced the method of intensive interaction (Cath Irvine,
undated), which makes easier to establish bonds with residents with severe
impediments in interaction (‘challenging’ or ‘forgotten’ residents). The introduction of the personal planning has
opened possibilities to get to know people, their wishes, priorities and act in
a direction that is synergic with them. Such improvements are already effective
while residents are still in an institution, improving their life and emotional
state, but at the same time making the staff work more effective and rewarding,
and since the relationship are improved, but even more since residents get more
of what they want and need there is less trouble with them, thus less strain in
conflict, frustration outburst and similar events. On the other hand, these
improvements in skills, attitude and organisation are also very useful in
preparing the resettlement and in the work in the community-based services.
Some of the residents survive the
institution as buddy pairs or cliques. They help each other, sometimes even
provide most of the care for the less “able” person in the pair but mostly they
are not allowed to be together in the room unless they are of the same sex. The
aristocracy are usually the leaders of the units and gatekeepers between users
and staff. The majority spends time by themselves, some just looking in the
empty space, some interact with others usually to open trading
opportunities.
Choice
Ability, even possibility to make
choices is extremely disabled and limited in a regimented collective living.
Residents cannot chose who they live with, what they eat, or what they wear:
Some of the residents can chose what clothes they want to wear (from
what is offered to them) but most of the residents wear the clothes they are
given. All clothes are washed together at the same time, and then they get
sorted and delivered to the residents (most of the clothes they wear is not
appropriate for their age and gender – it can easily happen that male adults
are wearing female or children clothes). A resident could not self-serve on the
dinner because he had to hold his pants from falling down with one hand. People
would trip and fall because their shoes are not appropriate, or the length of
their pants was too long for them. The residents can discuss the quality of
food, but cannot decide about the menu. All the activities are planned by the
staff. The residents can decide whether they want to participate in an activity
or not, but they do not participate in planning their activities. Sometimes the
residents are taken out to the movies and other cultural events and they also
go on a summer holiday once a year, but not all of them – mostly the same group
of people participates in these kinds of events. (Students’ observations)
The day rhythm is scheduled for
everybody with a time table. Waking up is really early, around 5:30, breakfast
is at 7:30*, lunch at 12 and dinner at 17, and the sleeping time is at 17:30
(some of them protest against this and are allowed to go to bed later). The
time table is done so that it suits the shifts of the care workers (also other
staff). This is most obvious in the morning, when residents have to get up
quite early to be taken care before the night shift ends and have to wait for
the breakfast to be served by the next shift two* hours later. Early bedtime
can sometimes be a reason of increased medication in order that there is less commotion
on a ward.
Participation
Highest possible participation is a
service ideal (‘Customer is always right!’). This ideal is very hard to achieve
in the institutional settings where the customer is transformed into the object
of service, ceases to be the one who orders or requests the service (Goffman
1961). There are various degrees and models of how to increase residents’
participation. In theory (and in some countries also in practice) the highest
degree of participation is that the service users own the service provision.
Between this and completely objectified role of an ‘inmate of a total
institution’ there a degrees from just sharing the information with residents,
to consultation, then involving them in decision making, providing independent
advocacy, self-advocacy, to including them in the governing bodies of the
organisation. Participation of residents is an avenue of democratisation
process in any services, so much more in the process of deinstitutionalisation.
Some of these practices have been
tried out in several institutions in Macedonia, always with some success. The
staff is generally open to such attempts and sees the value in it, on the other
hand the notion that residents are not able to express themselves (because they
are still children, ‘intellectually disabled’ etc.) and that the staff anyhow
knows the best (because they are professionals, have special knowledge etc.)
still prevails. Residents are excluded from making decisions as what they wear,
eat etc. let alone the major decisions on how the services are run. Yet, some
attempts of having unit assemblies that we witnessed during the camp in Demir
Kapija have shown that even the presence of residents in such assemblies is
welcome and changes the tone and content of discussion.
Claimer: This blog is intended as a
part of Situation Analysis and Assessment/ Evaluation Report of
Implementation of National Strategy on Deinstitutionalisation 2008–2018, which
will be soon presented to the public within the EU framework project Technical
assistance support for the deinstitutionalization process in social sector. For
this blog, Vlado Krstovski, Anja Kutnjak and Andreja Rafaelič are considered to
be co-authors.
References:
Brandon, D.
(1991), Increasing Value: The
Implications of the Principle of Normalisation for Mental Illness Services.
Salford University College.
Goffman, E.
(1961), Asylums. New York: Doubleday
& Co. (Pelican edition 1968).
Cath Irvine
(not dated) A Quick Guide to Intensive
Interaction (an introductory paper, available from the author info@cathirvine.co.uk).
Menzies,
L.I. (1988), Containing Anxiety in
Institutions. London: Free
Association Books.
[1] Staff do not always call the residents by their name, instead they
refer to the using pronouns (he, she, them). Very often they refer to the
residents as children even if they are adults, and also have a patronising
attitude that adults have towards children. On a rare occasion, but not as an
exception, staff uses inappropriate names (monkeys, calling them disgusting while changing their
dippers, swearing while feeding them...). On the other hand, the users
usually call the frontline staff as nurses.
[2] A classic professional imperative is not to get personally
attached, form bonds with clients or users of services. Menzies (1988) points
to the organisational barriers (e.g. frequent changes in the work posts) that
prevent bonding of the staff with patients as defence mechanisms against
anxiety that arises out of patients suffering or even death. No matter whether
we agree or not with such an attitude, it is practically impossible to achieve
this in an institutional setting where people live together for many years. If
there is no systematic approach to this issue usually what happens is that
staff creates some meaningful bonds with a few of residents, who are eloquent
and communicative enough and complying with the institutional rules. These are
their favourites and helpers in running the ward or institutions. A sort of
residents’ aristocracy. Then there are those who had a bad fortune that you get
at least some attention with behaviour that provokes the staff – what is
euphemistically referred to as ‘challenging behaviour’, these are the
institutional ‘troublemakers’. A (silent) majority of residents finds their way
somewhere in between these two extremes, usually by establishing the
relationship with other inmates, their own ‘economy’ and a place that is not
exposed. These are not making much contact with the staff – nor in a rewarding
nor in challenging way, they are placid and do not cause trouble. This can be
termed as ‘forgotten’ since they do not get much attention from the staff.
Ni komentarjev:
Objavite komentar