Residential buildings are usually dived into units, departments,
wards. This is the main spatial (and often organisational) division of an
institution. The wards have also a symbolic and homogenising meaning. They
gather the people of the same ability, diagnosis or classification label or age
group. The usual spatial organisation follows this quasi logic of progression.
Usually in the front building(s) residents considered ‘easiest to support' while at the back there are backward wards
for residents considered with high level support needs (most ‘disturbed’,
‘heaviest’) – people ‘not to be seen’. However, often happens (e.g. in Demir
Kapija and Banja Bansko), that there is a residence for ‘most able’, ‘most
independent' at the rear edge of the compound. There conditions imitate the
ordinary civil life arrangements – the rooms have attached small kitchenette, a
shower; people live as couples or simulate a family life. This part is usually
a showroom of an institution’s best achievement, practically already on the
outside of the institution, but really a simulacrum, a mirror both to
institution and the society seen from this perspective. Internally this
arrangement is regarded as a reward system, a confirmation of more ‘elevated
status’ in an institutional hierarchy of residents, and have thus a
disciplinary meaning and effect, even if this is not the intention.
The wards usually consist of a series of bedrooms along a longer
corridor, with lavatories usually at the end of it and a sitting room in a
prominent location. Often at the beginning of the ward there is one or two
rooms for the staff. This may be the dispensary, which often is the
headquarters of the ward and seat of the head of the ward.
While in hospitals the head of the ward are usually nurses, in Demir
Kapija a special educator has this function. They do not have their seat in the
ward’s headquarters but they have their own space (“physiotherapy”) where all
the head of the wards usually do their work and have their meetings. Special
educators being the heads of the wards makes sense since the main activity in
the ward is declared to be special education and rehabilitation, but some of
the educators complain about this arrangement. The head of the unit is a mostly
in a first line management position and they have to manage the staff, the
materials needed and keep the order on the ward. This takes away the time they
would have for the individual work with residents and off the special education
activities in general. This is the complaint, but the truth behind this is also
that working in such an institution is professionally frustrating in itself
since there is little progress and there is a lack of goals in, for example,
what is the goal of rehabilitation in an institution? The benefit of this
arrangement is that professional workers are present where people live and can
intervene in the real environment. This is a good starting point for the
deinstitutionalisation process. Just giving special educators the position of
the heads of the wards is not enough, for deinstitutionalisation they have to
start breathing with the ward, create opportunities for team work and really be
present on the wards and work together with the other staff and users.
In some institutions special educators and other staff have their
special premises (their offices or special halls, classrooms, occupation
therapy, workshops) where they perform their professional activities. In these
cases the activities are rather abstract do not have real life meaning and make
professional workers detached from what is really happening in the institution
and in the lives of the residents. On other hand it provides a safe haven for
some residents, a perceived reward for his or her behaviour, also a retreat for
a worker from the institutional life and it provides the institution a much
needed time division into the ‘working’ and ‘free’ hours. The life on a ward is
monotonous and boring and spending sometime outside, doing something, no matter
how interesting or not it may be, becomes as a reward in itself (and a
motivation for residents to comply with the rules and orders by the staff).
There is not much to do on the wards. And a lot of people cramped in
a small space. There can be up to 50 people on a ward, could be six to eight
residents in one room. There is no privacy, in some institution nowhere to put
personal belongings – so there is no use in having them (even clothes,
underwear are common and distributed at random. The general stance of residents
is awaiting, hanging about, lingering. Actually waiting but for nothing – since
there is not much happening, everything keeps repeating itself, everything is
organised by the management and staff. It looks like the time has stopped, like
the staff and residents alike want to grab some time of their own from this
shapeless time machine. This creates tension and events (sometimes unpleasant
like fights, quarrel, even violence and self-harm) in the zone of
uneventfulness.
Apart from Banja Bansko institution, which was made with a purpose
to accommodate residents with mobility disabilities, all the institutions have
architectural barriers (stairs, absence of elevators and other appliances that
surpass the barriers) that make mobility difficult if not impossible. This is
true even for the institution with a large number of residents with such
issues. In Demir Kapija, for instance, the residents with greatly diminished
mobility are mainly housed on a ground floor of the old building. This makes
access to outside a little easier, but there are still barriers to exit.[1]
However, the children in Demir Kapija are housed on the second and third floors
of the building. The do not have access
to outside at all. Anyway, these residents seldom move outside and spend,
without much exaggeration, most of their lives in their beds: they sleep, eat,
defecate, accept visitors and watch TV – everything in their beds. This
indicates that it is not only architectural barriers but also conceptual and
organisational barriers that keep them immobile. They are seen as people who
are ‘parked’ there and not people who live
there.[2]
This notion is supported by the lack of staff that would move them around. Even
if we concede to this assertion this is still a question of organisation of
work, since there can be seen staff with nothing to do or maybe doing things
that are less important than taking residents out.
Even when there are aids to enable mobility and accessibility they
are not always working or in function. In Demir Kapija, for example, the new
building has an elevator but it is not used (most often not working) and the
ramp that should be used to access the physical therapy is always somehow
blocked by either dirty clothes or broken chairs.
Even if the residents would be placed into accessible buildings,
there would still be an issue of mobility since most institutions have a
shortage of wheelchairs. People in institutions do not have or own their
wheelchairs but they use common wheelchairs that are usually only partially
working and they never have enough of them.
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.
[1] The 'new' building was built more in the line of accessibility, but
the majority of residents with mobility issues are not there. Probably on the
account of logic that residents with severe disabilities are not expected to belong
there.
[2] An explanation offered on the fact that people with severe mobility
disabilities reside on the ground floor was that it would be easier to evacuate
them in the case of fire or a similar emergency. This indicates that in
‘normal’ conditions they are doomed to stay inside.
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