Needs perception

People with disabilities perceive their needs as ordinary needs that everyone has. They want to have a home, to have a social life, to have a job or at least something to do, have an income. They want to grow up, have a happy old age; they want to lead their own life and have their own rhythm and be able to engage in leisure activities. They want to be relieved of the stress, which they encounter and be certain, at least, of basic contingencies of life, and, to have purpose in their lives. They want to be in interaction with other people, be understood and tolerated for little mistakes everyone makes. They want to connect to the people in meaningful exchanges to get information, exchange goods and services, but also to love and be loved. They want to be supported when in need but also respected when they are clients of various services and institutions. They want the power and strength to be able to decide on their lives and at the same time to belong to groups, community and society (Flaker et al., 2008).

These needs, no matter how ordinary, are hard to satisfy when one is labelled with a disability or a similar label (being old, poor, psychiatric patient etc.). Not only impairments even more so social and spatial arrangements, relationships and stigma produce many obstacles, barriers of physical, mental and cultural and attitudinal nature. In such situation, it is sometimes even hard to express, assert the needs, let alone to satisfy them. The result is that people placed in these precarious situations perceive some needs that we take for granted as burning, critical and urgent (as the need to go to the toilet whenever needed, do shopping, see friends and family for holidays). Due to a society which has built-up these access barriers and a system which has led to the segregation and social isolation people in such situations have had to resign themselves to a much more modest and constrained way of life than people usually have.  As a result, one acquires very low expectations, often low self-esteem and feel discouraged from making any demands and on the other hand, people develop ingenuity and bravery to cope with precarious contingencies that often are coupled with despair and sometimes-even anger (caused by great frustration) (Flaker et al., 2008).

The public at large mostly neglects the needs of the people with disabilities. Partly because of the invisibility and marginality, since many of them are confined either in institutions or at home because of the shame families may feel in some communities about disability, partly because the mobility constraints and access barriers. Often people that are helped by others are seen as ought-to-be-happy since they have been provided with their ‘basic’ needs and for their ‘special’ needs and should not ask for more. In this view, they are in effect deprived of needing, desiring or wanting many things that everybody takes for granted.

When asked people who have a prominent position in the community know very few if any people in need of support or with long-term distress. On other hand they perceive the residents of the institution as such. (interview in DK)

Generally, people with disabilities have stigma attached to them (particularly for the labels of severe intellectual disabilities, or behavioural and mental health issues), which is mainly based on the myths false very negative perceptions (being dangerous, incompetent, unworthy), losing humanity due to deviation from normality, from ideals of rationality, intelligence etc. Basically, this supports the disqualification as citizens, and decrease or even removal of a general contractual power (Basaglia, 1967).

These myths are supported by the myth of institutions being the right place to deal with people so labelled, since they need a special treatment and do not need (are not entitled to) what is ordinarily available in social, economic and everyday life. This myth is supported by the actual reality and day-to-day experience of the people with disabilities (Flaker, 2014).

The classic professional ideologies used to be very much in tune with disabling ideologies at large, sometimes even supporting and promoting them. The mandate of a social worker, a doctor, a special educator, a nurse and other helping professions is traditionally constructed on the ‘defect’[1] of their users, the need for help. In spite of recent changes in professional ideologies towards seeing the people as able (strength perspective), deserving and an important part of the society, these professional myths and ideologies still prevail on the ground in practical situations.

                All they (the inmates) need is to have a roof over their heads, be fed and sleep. And they are happy with that. (interview in DK)

To put people’s needs as a point of departure in planning services is thus also an important turning point as to look at people with disabilities as primarily people, and to turn the attention away from their disabilities towards their capabilities and to the quality of life.

                You have to take them (the inmates) as individuals and never restrict their possibilities. You can never predict what anyone can achieve. (Interview in DK) 

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.

References:

Basaglia, F. (ur.) (1967), Che cos’e la psichiatria ? Parma: Amministrazione provinciale di Parma.

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.

Flaker, V. (2014). ‘Deinstitutionalisation as a machine'. Dialogue in Praxis. 1–2 (1–2) Available on 10.12.2017 at: http://www.dialogueinpraxis.net.

---

[1] The term ‘defective’ and ‘defectology’ support this negative notion of disability and the process of helping itself.