In this blog we will portray the
life in institutions using the further two 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.
Personal development
Personal development in an
institution or service depends on the setting practically – how it enables
personalised activities, and symbolically – what value of the user it conveys
to all the participants in the situation. It depends also on the degree of
intimacy it provides and concern for really individual, personal changes and
progress in terms of quality of life (ability control one’s life, building
skills, relationship and dealing with pain and distress, but also improving
living condition, income, membership in society etc.).
In the most of the institutions in
Macedonia, the setting in its own right discourages the personal development.
On the practical level, it is most obvious with mobility issues mentioned
above, in some institutions there is almost absence of meaningful activities,
while in some the activities are not practically relevant for person’s actual
living conditions or are just performed to keep people occupied. On a symbolic
level some institutions are in a such a bed state that the message given to the
residents, staff and visitors is that people are not worthy, able or possible
to progress, that it is just a place where they are parked. Even if the
physical appearance of an institution is better it still by the virtue of being
apart from the rest of the society, community, conveys a message that it is
place for people with minor prospects in their life – be it infants’ home,
children’s home, rehabilitation centre of people with disabilities, mental
hospital or an old age home.
In all institutions the there is a
lack of privacy. In some cases, this lack is almost absolute. Everything is
done in front of the others including bathing, using toilet, there are no
private spaces, not even a small closet where one can put his scarce
belongings. In some institutions, these amenities are not so sparse and also
where they are, residents can construct, with a lot of ingenuity, some kind of
meagre and provisional personal existence (e.g. carry their belongings in a
plastic bag, stuff them in one’s trousers forming an incredible bulge). Even in
those where there are more possibilities for intimacy (rooms for two residents,
availability of the wardrobes, personalised laundry system etc.), the privacy
and possibilities to maintain one’s identity are curtailed by an ever present
collective audience observing what you are doing and, by a deficient control of
personal information, incomparable to the degree of it one has in an ordinary
everyday life outside the institution. For instance, personal information is
almost freely available to most of the staff, and on the other hand, the
residents have little information and control of what their files contain.
In principle, on the declarative
level, in all of the institutions, individual development is a concern and a great
part of staff believes in users’ capacities. There are, however, institutions
who have lost a hope that this can be achieved and in effect, the notion is one
of stagnation and despair. In some, there is a lot of effort to monitor,
sustain and propel the individual development of residents. In Mothers and
infants home Bitola, for instance, they have few years established the system
of key-workers, which in combination with sound teamwork, which enables the
staff to support, not only intellectual and motor, but also emotional and interaction
development of infants and toddlers. However, by the virtue of being in an
institution, isolated from the ordinary relationships and community at large,
the dimension of social development and, even more so, the social personal
history remains almost completely blank. Institution is a setting that provides
a perspective of a person as an abstract human being unrelated to social
relationships, events and ordinary circumstances of life. One is unable to
form, construct meaningful membership in informal social groups (of peers,
relatives, even in public), get involved in activities of his or her own liking
and interest, and find the situations that would personally suit him or her.
Mixing
Residents of the institutions are so
to speak obliged to associate and socialise with other residents, the staff and
to some degree with their relatives (if they come and when they come). They
come very rarely as estimated in Banja Bansko and Demir Kapija less than 10 %
of people living in institutions have regular visitors. Even more, they
deprived of mixing with other people – be it in the public places or in
interest communities, social events and like.
Most institutions report volunteer
activities and some institutions have (due to close vicinity of an urban
milieu) many resources and are systematically working on inviting various
guests, either for some events or on a regular basis. The presence of
volunteers is an important in improving the social environment; it gives a
chance to residents to step into alternative roles, to relate to people in a
different manner. What is most important, the presence of volunteers introduces
at least a ray of an ordinary world into the institutional living. It allows
people to talk about issues that diverge from institutional topics, look at
their life from another perspective, and get experience of an everyday
interaction, in which it is more likely that they will be seen as just another
human being and not as a person with disability, service user, a resident. With
some effort and right volunteers, these activities can also provide some
spontaneous advocacy in dealing with internal and external authorities.
If the social isolation and absence
of mixing with other people than co-residents, staff and relatives is an effect
of segregated facilities, there are also the divisions within the institution
that prevent mixing within.[1] The
relatives of the residents do not seem to be welcome, even less actively invited
to the institutions. On declarative level, the invitations are usually issued
and usually social workers complain on the relatives that they tend to forget,
write off their residing kinsfolks. However, there are many boundaries set and
often the message is that relatives are intruders and troublemakers – ‘they
upset the children and then they leave’. Such messages, boundaries and the
formal institutional atmosphere (many people who deal with one’s relative and
constantly changing), but also geographical distance prevent relatives to be
more involved in the life on the institution and their relatives.
In most institutions, there is also
internal segregation between the residents and staff. Not only that their basic
involvement is radically different – residents live in the institutions (24/7)
and staff works there (8/5) and lives at home most of their time, but there are
deeper seated, cast-like divisions. There are segregated toilets, eating
facilities, the cutlery is different, the access to staff rooms is limited to
residents, while the staff enters residents’ rooms unannounced without
knocking, let alone that they would invite them to their homes. Most of these
taboos have little to do with functional issues, although sometimes the
hygienic reasons are given. Mostly it has to do with construction of otherness,
almost racist prejudice, even superstation, that residents are a source of
pollution, infection - a bad omen.
Most surprising, for an outsider, is
that there are division among the residents themselves. Although there is a
great degree of comradery, mutual help and a kind of internal economy in most
of the institutions, there is a hierarchy based on formal divisions
(homogenised ward, categorisation of disability or other diagnoses). There are
also spontaneous, semi-formal arrangements that stem from the punishment and
privilege system that silently operates beneath the formal ideology. In these
some residents in exchange for the help to the staff, not only in material
services like cleaning, carrying etc., but also in minding and regimenting
other residents, receive benefits and privileges like better treatment, more
dignified role, more of the scarce amenities, more freedom to move.
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.
Christie, N.
(1989), Beyond Loneliness and
Institutions: Communes for Extraordinary People. Oslo: Norwegian University
Press.
[1] The internal boundaries and divisions is what differentiates the
total institutions from total communities (Christie 1989).
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