Bolton Data for Inclusion
The
Action Research Centre for Inclusion
(Sponsored
by: The Barrow Cadbury Trust)
at
Bolton Institute of Higher Education.
Data No 12 :
July 1997
Author(s) :
Dr Evemarie Knust-Potter
Title :
Inclusion in Berlin
Abstract :
Non segregation andragogy as an instrument for implementing community living for people described as having learning difficulties.
In this paper I set
out andragogical principles for the development of community-based housing
environments for people described as having learning difficulties which
facilitate community membership and participation[1].
The starting point of my argument is that, without a more holistic
approach "ordinary" dwellings for people labelled as having learning
difficulties are much in danger of becoming "mini institutions" with
institutional structures and similar exclusionary consequences.
A simple change of the spatial situation is not sufficient in itself, if the
objective is real inclusion in society for people labelled as having learning
difficulties or, more generally, people in marginalised positions. Kinsells (1994) puts it very graphically: you put an
institution in a mincer and what do you get out at the other end - lots of
little mini-institutions. A reality
we can see and experience in lots of so-called community-oriented housing
situations for marginalised groups.
That is to say; community living is more than just housing, it involves, for
people labelled as having learning difficulties, their whole living situation of
every-day life without segregation. This
desegregation then has a ripple effect for neighbourhood structures and for all
involved parties.
§
A non-segregation-andragogy in
the framework of community living is based, in its theoretical orientation, on
the normalisation principles.
§
The first empirical
precondition for non-segregation andragogy is de-institutionalisation, that is
to say a reform of the housing situation for
people labelled as having learning
difficulties and the elimination of imposed segregation.
§
Secondly it requires
age-appropriate options of activities including adult education, self-advocacy
and empowerment.
§
Thirdly it requires rethinking
the professional value systems and self-images, and reorganising the structures
of social service provision.
§
It requires fourthly,
strategies for the initiation of changes in the consciousness (Bewubtseinswandel)
and behaviour of the public (from
exclusion to inclusion: spatial and social
barrier-freedom; perception and acceptance of interdependence).
It is important to set all this in a holistic, system-ecological frame of
reference (Bronfenbrenner 1981, Speck 1990, Huschke-Rhein, 1986-90, Dormer
1987), including the examination/investigation of social conditions, to what
extent do they hinder emancipation, which political strategies are necessary and
how are they to be implemented.
The normalisation
principle is an approach for the valorisation of the individual/existential and
social roles of people labelled as having learning difficulties - and people in
marginalised positions in general. It
was developed in Scandinavia (Nirje 1994, Bank-Mikkelsen 1980) and the U.S.A. (Wolfensburger
1972, Wolfensberger 1983, O'Brien & Lyle 1988, Flynn & Nitsch 1980) and
has its foundation in a humanistic oriented value system, which is based on
principles of equality, freedom of decision and choice, and right of self
determination.
The normalisation principle can in this way be understood as a reform concept, a
paradigm shift in the theoretical and practical work with people labelled as
having learning difficulties. While
traditional approaches can be characterised as medically-oriented, and dominated
by professionals (that is to say top-down), new approaches are more
pedagogically-oriented, emancipatory and could be termed more as service-user
determined bottom up initiatives.
The normalisation principle as the theoretical foundation for work and
interaction with people labelled as having learning difficulties changed
traditional perceptions and attitudes tremendously.
In congruence with this principle, processes of change in everyday life
could be initiated and segregation, marginalisation, isolation and social
exclusion could be countered. The principle forms a theoretical foundation for
the critique of traditional service structures and for the conceptualisation of
guiding principles for new service structures (Wolfensberger 1973 & 1983,
O'Brien & Lyle 1988, O'Brien & Tyne 1981).
Critiques for the normalisation principle are extensive and derive from
varied political positions. One
constructive critique comes, for example, from the feminist movement (Brown
& Smith 1992, Burns & Roberts 1990, Ungerson 1990).
Women demand additional consideration for issues of power relations.
They also argue in favour of the principle of meaningful association -
that is to say the establishment of Self-Advocacy - Groups of service users to
speak for themselves for the development of an own identity and for political
actions.
This is not the place to set out all the
controversies which the normalisation principle initiated in Europe and the
USA.. One should just point out that the normalisation principle can be seen as
the battlefield in which the proponents and opponents of de-institutionalisation,
community membership and the empowerment movement of the marginalised groups,
fought and still fight. Equally,
here we can situate the watershed from a medically-oriented approach to an
holistic approach which includes the whole person (not just her handicaps) in
her spatial and social environment.
Over time the
guiding principles of working with people with disabilities have changed.
The appropriateness of the institution as the location and therapy as the
intervention has more and more been called into question.
Three steps can be identified (cf Bradley & Knoll 1992):
§ Institutionalisation (medical model), until now
§ De-Institutionalisation (developmental model), started around the 1980's
§
Community membership
(inclusion model/assistance model, from the 1990's
This is to be understood as a
change from institutionalisation, via de-centralised living, but in a
professional-determined way to self-determined living and housing with
professional assistance.
In the second step there has been a movement
towards de-institutionalisation, that means, changes from a
medical-deficit-oriented approach (with its concomitant static professional
stances of protection, caring and risk avoidance), to a developmentally oriented
approach. The complexity of this
approach, unfortunately, became very often reduced to a change in the housing
situation. Having an apartment or a
house in a normal local community is a beginning, but doesn't mean
automatically, that you become a participating member of the neighbourhood (Towell
1988, Towel & Beardshaw 1991, Knapp et al 1992).
This is where the third movement takes over: the neighbourhood membership and
the assistance-principle. This step
demands system change. The
particularities of this third movement are the following (Kinsella 1993, Lovett
1993, Ward 1994):
§ focusing and facilitating of self advocacy/self determination/empowerment
§ inclusion of every day life and the environment of the people and
§
calling into question which
actions and conditions are identity-enhancing and which are identity-reducing.
People in marginalised
positions themselves have stepped into the debates over these issues and have,
reflecting their own experiences, questioned traditional services and
professional performances (People
First 1994, Dowson 1991).
If we look at
service provision for people who have been labelled as having learning
difficulties, we can identify three more or less clear cut stages (Knust-Potter
1993):
§
provision in the form of
teaching and training programmes within specialised institutions and hospitals
§
specialised programmes within
mainstream institutions, for example cooking or woodwork for people with
learning difficulties in community
adult education centres
§
self determination, self
advocacy, empowerment.
Here we have reached another
turning point: Here we enter new
paths which are founded on the discovery of abilities and potentials of the
people in focus, themselves. With
this I mean paths, where the individual person with her individual potential and
her human rights is placed in the foreground.
Keywords here are: empowerment,
normalisation principles, integration
and participation, inclusion,
personal development with its aspects, self confidence, self esteem,
resilience to conflicts etc. (Szivos 1991, Sutcliffe 1993, Ward 1994, Nirje
1993, Theunissen 1995, Knust-Potter 1994, Herriger 1995).
This means the dimension which explicitly
focuses on the self-image (Selbstbild) and the other-person's-image (Frembild)
of the individual in a marginalised position.
By means of appropriate personality-building services, including
counselling, the objective is to gain a realistic attitude towards one's persona
and social condition and thereby facilitate the coping with one's disability.
Realistic self-image is aimed for, which does not just prevent the
development of secondary handicaps (via an internalisation of negative, devalued
role-attributions), but what is more identifies and questions them.
Self-determination and empowerment means the realisation of one's own strengths
and power and rights. It is a
concept of "self-enabling" of the person.
In contrast to expert-oriented interventions, empowerment starts with the
abilities of individuals and groups for self-organisation and self-advocacy/
self-determination of their own lifestyles.
The principal goals are not adaptation, but rather self-determination and
self-advocacy; not integration but inclusion and the appreciation of difference.
Integration presupposes segregation and implies very often an uncritical
position toward that into which one is intended to be integrated (Miles-Paul
1992, Whittaker 1991, King's Fund and VIA 1992).
The self-advocacy/ self-determination continuum ranges from very elementary
activities (like choosing tea or coffee, accepting or refusing food) to more
complex aspects determining the individual life such as empowerment, political
actions towards a non-segregated life or against stigmatising labelling etc.
The objective is to overcome social injustice, discrimination and
inequality. This is to be carried out through establishing the greatest
possible control and command over one's own life. Without this political dimension of the service users
themselves as active actors, self advocacy and self determination would not be
more than just another attempt by the service-providers to guess what the
service-users "need".
Not just the housing
and living situation of the people described as having learning difficulties are
in a process of change but there are also immense changes in the working
conditions and the professional roles for the staff to recognise.
The displacement of the workplace and service structures from the
hospital and big institution into the community has a great impact on the work
of the involved staff. The staff in
small, de-centralised, community integrated settings need different skills and
knowledge than what has been traditionally expected of them (cf Felce 1991, Lowe
& de Paiva 1989, PSSRU 1991, Allen 1990, Mittler 1985).
The change could be described as:
§
from
outside to inside the community:
The work no longer takes place in closed institutional settings,
segregated from society but in small settings within ordinary housing estates
and neighbourhoods.
§
from
duality to plurality:
Interactions in institutions take place in dualities, between staff
and service users. In the
community, on the other hand, at least after leaving the house, the interactions
become plural, interactions with the total mix of people of a neighbourhood. The possibilities of social encounters are not dual and
limited but plural and varied.
§
from
dominance to interdependence:
Traditional training for work with people described as having learning
difficulties was based on the assumption that professionals had to take the
leading function and had to take all necessary decisions.
A process of rethinking is now under way, which involves all actors
concerned - including staff, service users, service planners and service
providers.
§
from
the planned and plannable to the unplanned and unplannable:
If the community is really to be
included in the life of the users, the kinds of interactions and the contents of
the work of the staff need to be changed. For
the staff and for the users this means extending individual and social action
competencies (Handlungskompetenzen), and locating learning processes in real
situations in the community (Situationsansatzen - Zimmer 1984) - in contrast to
artificially, constructed situations (therapeutic laboratories) in segregated
institutions.
The public: recognising interdependence
It leads to a vicious circle, if people with disabilities are seldom present in
the public and society, because of this absence, has little or no chance to
change prejudices and overcome fear of contact.
Communities are not just prepared for people labelled as having learning
difficulties suddenly to come and live with them, expressing themselves and
behaving in their own particular ways. Here
it is important and necessary to initiate consciousness-raising and reflection
processes in the public (Mittler 1987 & 1989).
That means:
§
new
forms of relations with the public:
Away from the purely charity-oriented public relations, which very often
is connected with a lack of dignity in the presentation of the people concerned. People labelled as having learning difficulties are very
often presented as special persons, who live in special situations, being taken
with special buses to special schools and special workshops.
This kind of public relation is one-dimensional and passive (cf VIA
1994).
§
facilitating
the change of public attitudes:
Important tasks for the present are to initiate public debates.
Community education has an important role to play here:
Community education, understood as an action-oriented intervention, which
includes interaction and shared activities and experiences in real situations (Blunden
1988, Zimmer 1986). This approach
focuses on the importance of people talking for themselves.
People who have lived or still live in marginalised positions, are the
best and the authentic voices for informing about their situations (McConkey
1991). It is important to give
those people the opportunity and the space to talk, act, participate and
contribute. Shared activities of
people with and without disabilities can open chances for the building of
solidarity groups, for example for the enforcement of demands for physical
accessibility and spatial barrier-freedom - from which incidentally other groups
with special mobility requirements (older people, parents with prams etc.) can
also profit. Keywords here are
citizen advocacy (Williams 1989) and circle of support (Perske 1980).
§
Interdependence
Only when the public, the neighbours in the
house, in the street, in the shops etc perceive that it has its advantages, if
people labelled as having learning difficulties live within the community –
only then does segregating become unnecessary (Dossa 1992).
There are often little things, which make this consciousness–raising
possible: watering the plants and looking after the pets when people go on
holiday, collecting the post if nobody is at home, keeping an eye on the flat,
when people are at work all day, looking after older people or doing some
shopping if people are ill – but also being asked to help in the shop, not
being ignored and not living in a totally anonymous world.
People with the label “learning difficulties”, for example, are more
generally in need of assistance in the community.
For them, a life in anonymous, singularised life worlds (lebenswelten),
in which each atomised individual in isolation just looks after himself
Mitscherlin 1965, Beck 1986), is not possible.
People have a need for assistance and this could be combined with social
interactions and human encounters and relationships.
That means that the presence of people labelled as having disabilities in
the community calls for alternative value systems. Human interactions become necessary which also creates
opportunities for anonymity.
Anonymising environments without communication and social interactions cannot be
the basis for a meaningful living-together of people with or without
disabilities. It is important to
achieve insight into the fact of dependence on one another.
This means it is necessary to realise that the segregation of people in
marginalised positions means a restriction in the variety of humanity.
Segregation produces an artificial homogeneity instead of a natural
variety.
Non-segregation-andragogy on the basis of the normalisation principle in the
historical-social context cannot all be achieved from one day to the next. It is its very movement which needs lots of time and stamina
from all sides. This means also to
rediscover slowness. Perhaps in our
society the speed a new paradigm which can shift our view of the world a little
is needed.
Allen,
P., Pahl, J., Quine, L. Care Staff in Transition,
HMSO, London 1990
Bank-Mikkelsen, N. "Denmark", in Flynn, Nitsch, (Hg.)
Normalization, social Integration and Community Services.
Baltimore 1980.
Beck, U. Risikogesellschatt.
Auf dem Weg in eine andere Moderne.
Frankfurt a.M.1986
Blunden, R. (Hg) Ties and
Connections, King's Fund,
London. 1988
Bradley, V., Knoll, J., Shifting Paradigms in services to people with
developmental disabilites. Human
Services Research Institute, Cambridge.
1992.
Bronfenbrenner, U., Die Okologie der menschlichen Entwicklung
Stuttgart. 1981
Brown, H., Smith, H. Normalisation. A
reader for the 90s. London
1992.
Burns, J., Roberts, T. A Feminist Analysis of the Normalisation Principle,
London 1990.
Domer, K. Neue Praxs braucht
neue Theorie. Okologische und
andere Denkansatze fur gemeindepsychiatrisches Handeln.
Gutersloh 1987
Dossa, P.A., Ethnography as narrative discourse: community integration of
people with developmental disabilities. In
Int. J. of Rehabilitation Research. 1992
Band 15, S. 1-14
Dowson, S. Moving to the Dance
VIA, London 1991.
Felce, D. Published Material
from Research Programme on small Homes.
Konzept, Cardiff. 1991
Flynn, R.S., Nitsch, K.E. (eds) Normalisation,
Integration & Community Services. Baltimore.
1980.
Herriger, N. Empowerment und das
Modell der Menschenstarken. Soziale Arbeit %/1995
Huschke-Rhein, R., Systemische Padagogik (4 Bande) Kolh 1986A1990
King's Fund Centre, VIA LASA oack-learning about self advocacy.
London 1992.
Kinsella, P., Group Homes.
An ordinary Life? Manchester
NDT 1993a
Kinsella, P., Supported Living.
A new Paradigm. Manchester
NDT 1993b
Knapp, M. et al Care in the
community. Challenge and
Demonstration. Canterbury 1992.
Knust-Potter. E., Erwachsenenbildung ein Fundament fur normalisierte
Lebensbedingungen, in: Erwachsenenbildung und Behinderung, (4) 2/1993, S.8
14
Knust-Potter, E., We can change the future in: "Geistige Behinderung",
4/94, S. 319 330.
Knust-Potter, E. , Community Living: Normalisierung der Wohn und
Lebensbedingungen von Erwachsenen, die als geistig behindert bezeichnet werden.
Diss. FU Berling 1995.
Lovett, H., Foreword In:
Kinsella, P. Supported Living, A
new paradigm. Manchester 1993.
Lowe, K., de Paiva, S., NIMROD. The
Evaluation of the NIMROD. the
Service, Staff and Clients. fingerprints,
Cardiff. 1989
Lowe, K., de Paiva S., NIMROD an overview. A
summary report of a five year research study. Fingerprints, Cardiff
1990
McConkey, R. Opening doors.
Scottish Society for the Mentally Handicapped,
Glasgow 1991.
Miles-Paul, O., Wir sind nicht
mehr aufzuhalton. Behinderte auf
dem Weg zur Selbstbestimmung. Munchen
1992.
Mitscherlich, A., Die Unwirtlichkeit unserer Stadte. Frankfurt, 1965
Mittler, P., Quality of life and
services for people with disabilities.
BIMH, Kidderminster 1985.
Mittler, P., (Hg) Forward, towards education for all.
Cassell, London 1987
Mittler, P. The involvement of families and the community in curriculum
development. Vortragsskript
Oktober 1989
Nirje, B. Das
Normalisierungsprinzip - 25 Jahre danach.
In VHN 1994, Band 63 Heft 1, S. 12-32
O'Brien, J. , Lyle, C., framework for Accomplishment, Responsive System Associates, Georgia 1988
O'Brien, J. , Tyne, A., The Principle of Normalisation. VIA London 1981.
People First Outside but not
inside yet. London 1994.
Perske, R. Circles of Friends.
Partenon Press, Nashville USA 1988
PSSRU (Hg.) Staffing Community
Services. Canterbury 1991
Speck, O. Menschen mit geistiger
Behinderung und ihre Erziehung. Munchen
1990
Sutcliffe, J., Simons, K., Self
Advocacy Leicester 1993.
Szivos, S. Consciousness
Raising: An Attemp to Redress the
More Repressive Aspects of Normalisation, but not its More Positive Ones.
In Clinical Psychology forum, 6/1991.
Theunissen, G., Empowerment und
Heilpadogogik. Freiburg i.B.
1995
Towell, D. an Ordinary Life in
Practice. King's Fund, London
1988
Towell, D., Beardshaw, V. Enabling
community integration. London,
King's Fund 1991
Ungerson, C. Gender and Caring.
Work and Welfare in Britain and Scandinavia.
Hemel Hempstead 1990
VIA, Information London 1994.
Ward, L. Values and Visions.
Changing ideas in services for people with learning difficulties.
Manuscript. 1994.
Whittaker, A. Supporting Self
Advocacy. King's Fund.
London 1991
Williams, P. The value of
citizen advocates. In Nursing
1989, Band 3, Heft
44.
Wolfensberger, W. The Principle of Normalisation in Human Services National Institute of Mental Retardation, Toronto. 1972
Wolfensberger W., In Mental Retardation 1983 Heft:
6, Band: 21.
Wolfensberger, W., Glenn, L., Program analysis of service systems (PASS); A
methodology qualitive evaluation of human services.
Toronto 1973.
Wolfensberger, W., Thomas, S., PASSING
(Program analysis of Service system's Implementation
of Normalisation Goals). Toronto
1983.
Zimmer, J., Der Situationsansatz
als Bezugsrahmen der Kindergartenreform
In: Zimma Erziehung in fruher Kindheit.
Enzyklopadie Erzehungswissenscaft Bd. 6 Stuttgart
Zimmer, J. Die vermauerte
Kindheit. Weinheim 1986.
[1] The following is a very abbreviated account of the arguments in Knust-Potter. 1995.
Further information is available from:
Karen Barton (k.barton@bolton.ac.uk)
Bolton Institute
Chadwick Street
Bolton, BL2 1JW
England