Social policy usually addresses the needs that are visible even from the distance, relatively easily identifiable and that constitute the major and robust indicators of wellbeing – e.g. poverty, housing needs, access to health, education, employment rates, income, housing etc. Health care or nursing has a more micro-perspective, while nominally acknowledging the environmental and social impacts, it deals mainly with the body and life-functions in relation to person’s dependency on care of the other (feeding, mobility, personal care and hygiene etc.) ('Virginia Henderson, cf.: Current nursing 2012). Psychology does address needs of more personal kind, however in a rather abstract and grand way (e.g. needs of belonging, self-esteem, self-actualisation in Maslow’s (1970) hierarchy of needs) and attributes the need to the human personality rather than social interaction. While all these aspects are important, it is equally important to address the needs arising from the minute aspects of social interaction – the ones arising from performing everyday activities, ones that deal with stigma and conversely with respect, with career (especially ‘downward’ streams), life events and the issues of emancipation and affiliation as the basis of the personal (contractual) power (Flaker et al., 2008).
Daily Activities
Everyday activities like routines, personal hygiene, housework and
various errands are usually not perceived as needs, rather as something that
needs to be done. When in need of support of others these, activities become
needs, something that we need to put an effort to attain. There is little
research on these needs in Macedonia. However, we can safely assume that there
is a great need for support in doing precisely these activities. One of the
indicators for residents of the institutions is that the main bulk of work in
them is dedicated precisely to these issues: personal hygiene, feeding,
lifting, moving around etc. This of course may be partly due to orientation of
the institutions but mainly it is because of the need for such support. In the
process of personal planning and in introducing of intensive interaction it was
obvious that these activities are of crucial importance – not only in term of
people being fed, washed and warm, but also in terms of the humanity and
sociability of people with intense needs. These are not only instrumental
activities as we usually see them but also means of connecting, asserting ones
will and presenting oneself to others. What is so obvious with people with
intense needs is true for everybody else, regardless their impairment, however
some people need less support.
Among the people in need who do not reside in institution, these
needs are more obvious with people in old age who sometimes are becoming
dependent on help of other people progressively, it is also obvious with some
physical disabilities, but also very important with mental disabilities. People
with intellectual disabilities would sometimes need assistance in taking care
of housework, in doing errands, shopping etc. Similarly, people with mental
health problems often need help in maintaining their households, escort when
making errands of bureaucratic kind, in some cases (e.g. depression) also with
the bodily hygiene. With children this need is obvious regardless existence of
disability, in their case care has also pedagogic elements of learning to care
for oneself. This process is with children with disabilities probably slower
and has to be given a special attention (Flaker et al., 2008).
In contrast with everyday routines of self-care, housework and
errands in public, which are usually experienced as mere necessities, however
instrumental they are for the quality of life, the leisure activities are more
seen as desires, and something of our particular choice, something that
expresses our identity and something that creates it.
In personal plans, residents of
Demir Kapija expressed the wish to have more of the cultural life with an
emphasis on a music and concerts. This seems important from the perspective of
giving people back their identity. Being able to participate in the cultural
happenings is important for a person to live a fuller life inside or outside of
the institution, life not reduced to what to eat, what to drink and where to sleep.
These activities are viable while institutions are still in existence and for
the process of transition as the concert organised in DK indicated. However,
the more important is to observe these needs in the post institutional
settings, since it is important means of participation of people with
disabilities in the community, society, a means or acquiring valued social
roles but also of expression and representation of one’s distress, experience
of being labelled, discriminated to the public at large.
Stigma and difficulties in interaction
Although discrimination can happen on many diverse levels, including
the structural ones, the stigma is an interaction phenomenon, it happens in the
everyday contacts of the people. As a disqualifier it operates in the realm of
interactional offences, small things, mishaps, mistakes, we do all the time in
the everyday interactions that can imply that we are not respecting the
personality (personal space, belongings, ways of addressing the other – eye
contact, listening etc.). These mistakes are usually mended as we go without
even noticing that there was an offence, by apologies, politeness, kindness and
other remedial interaction (Goffman, 1963). Stigma interprets these offences by
referring them to the discredited status an interactant (e.g. disability) and
destroys possibilities of the remedial actions of the interactants. Stigma is
therefore, a destructive disruption of everyday interaction by imputing to the
interaction extraneous definition of situation and disabling interactants to
refer to the immediate relevance of the interaction.
Being a recipient of a social benefit, a user of social service
(crossing the subsidiarity threshold) is stigmatising since it shows that I am
not capable of taking care of myself and that I do not have my own people to
help me with that. This seems to be a very strong issue in Macedonian culture.
A social worker recalled a person who after receiving a social benefit when he
was in need wanted to repay it after he recuperated. This can be sign of
modesty and pride, but also as somebody, like in an everyday interaction
wanting to remedy his interaction offence, to reconstruct himself as a credible
member of the community.
Being in an institution cements this stigma, perception of somebody
as not credible. The fact that somebody lives in an institution gives off the
message that he or she is not being able (not to be trusted) to live with other
people, have a status of the full citizen. Placing somebody in an institution
makes a label more than just utterance – it becomes a social fact. This has not
only the immediate effect on the stigma of the person who is institutionalised
but also, by the signification chain on all the (potential) people who could be
so labelled.
Resettling from institution will likely cause two processes. One is
that it will weaken the stigma since the “place” of cementing the discrediting
act, the other will be that people with disabilities and other labels who are
now in the institutions will be more present in the society and therefore make
it possible to deal with the issue of exclusion and inclusion in the immediate
environments and in practical term. This will definitely diminish the overall
power of stigma but can sometime spark also immediate rejection and moral
panics and crusades (e.g. NIMBY).
Stigma finds its logical basis in the way disability is recognised
and described: a medical condition marking the person with a stigma that no
medical treatment can erase. It translates into unchanging disadvantage and
results in a misfortunate state deserving pity, charity but calling also for
differentiation and exclusion (Shavreski, Kochoska, 2017: 28).
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 Andreja Rafaelič is considered to be co-author.
References:
Current nursing (2012) 'Virginia Henderson's Need Theory' Current Nursing/ Nursing Theories. Available at: http://currentnursing.com/nursing_theory/henderson.html
Flaker, V., Mali, J., Kodele, T., Grebenc, V., Škerjanc, J., Urek, M. (2008), Dolgotrajna oskrba: Očrt potreb in odgovorov nanje. Ljubljana: Fakulteta za socialno delo.
Holland, K., Jenkins, J., Solomon, J, Whittam, S. (2008) Applying the Roper-Logan-Tierney Model in Practice. Churchill Livingstone.
Maslow, A. H. (1970). Motivation and personality. [2nd edition] New York: Harper & Row.
Roper, N., Logan, W., Tierney, A. J. (2001), The Roper-Logan-Tierney Model of Nursing. Edinburgh: Churchill Livingstone.
Shavreski, Z. & Kochoska, E. (2017) ANED Country report on social protection and Article 28 UNCRPD – FYR Macedonia, Academic network of European disability experts, [On line] Available at: http://www.disability-europe.net/country/fyr-macedonia?theme=social-protection
