ABSTRACT: Lancaster sept.2014
What is it like to be an adult with intellectual disability? - lifeworld
experiences encountering/meeting a professional world -perspectives
related to Axel Honneths concepts of recognition.
Britta Nørgaard, Senior lecturer and ph.d-fellow, UCN and Aalborg University, Hobrovej 85, 9000
Aalborg, bkn@ucn.dk or bkn@learning.aau.dk
What is it like to be an adult with intellectual disability in a modern society as the Danish? This
question is seldom raised in the Danish Disability Research as it is hardly constituted as a research
area at all.
Through lifeworld interviews people have told me about their experiences as adults with partly
invisible intellectual disability, living their lives dependent on people from different professions. These
interviews are made with a phenomenological approach, and they tell stories from living a life very
different from many of us. Some of the interviews are made with people born with intellectual disability
– they have never lived a life as so-called “normal”. Others have got a brain damage as adults, and
they have all lived a so-called normal life before. Observations in daily life and work and interviews
with focus groups with different professions have given me an overall impression of the
encounter/meeting between the citizen and the professional.
The social philosopher Axel Honneth says that lack of recognition and infringement often can be seen
outside the public eye. Often infringements are caused by people close to the person experiencing this
lack of recognition or offence.
We all hope to be met with recognition and understanding, and we are becoming who we are in
interaction with others. It is very interesting to investigate values reflected in the professional
encounters between the citizen and the professional. Is recognition as Honneth sees it part of these
encounters/meetings – and can other phenomenological approaches contribute to the understanding
and perhaps improvement of these encounters?
These professional encounters are based on many different conditions. Economy, effectiveness and
education are included in these conditions. So are policies, traditions, culture. The UN Disability
Convention is signed also in Denmark, but we can still discuss whether the implementation has
succeeded.
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My key question /Introduction
What is it like to be an adult with intellectual disability in a modern society as the Danish? This
question is seldom raised in the Danish Disability Research as it is hardly constituted as a research area.
In general adults with intellectual disabilities seem to be absent from many research areas. Especially
people who suffers from quite severe, but invisible problems are seldom seen in the Danish research.
What do we know?
In international philosophy you find Licia Carlson and Eva Federer Kittay describing the field, almost
breaking new field in discussions with a tradition where cognitive rationality has been a core value.
They defend an approach where you recognize the human being in spite of Otherness. In philosophy
you also find the Australian Peter Singer who claims that it is reasonable to kill human beings with
severe intellectual disabilities (Carlson:2010a; Kittay:2005a). In Germany you have a strong tradition,
including philosophy and ethics in research and education in the field of “behinderten” – people with
disabilities. In Norway you quite often see an interest to hear the voices of these people in different
research areas related to pedagogy and sociology and quite often integrating a phenomenological
approach.
Looking into research in the social and also the pedagogical area in Denmark this group is hard to find.
2013 Bonfils and Bengtssons wrote an article Danish disability research across half a century
presenting the area and its weaknesses and blind spots. In Denmark one of the more remarkable
contributions is the work from Frank Bylov presenting the history of people with developmental
disability and their empowerment movement (Bylov:2010). For me it seems quite significant that you
quite easily will be able to mention the names of the few researchers in this field - and still I lack them
interviewing people themselves : how do the group of intellectual disability themselves experience the
encounter with the professionals? Even if you see a bigger interest for this group in Norway ( e.g.
Lorentzen, Lillestø, Slettebø) and in Germany ( Dederich, Bedorf, Gröschke) it is still hard to find
research going that close!
How many and where? – Denmark 2014!
One aspect of the area is a question of number. How many are they? Is it at all a number of interest? It
is quite hard to give a proper answer. In no country you have a totally fixed definition of these
disabilities and you have no exact statistic number. Even if you try to compare or sort out different
definitions you might get very different numbers (Grönvik:2007). This problem is even more obvious
when you deal with an intellectual disability that often can be invisible. In a welfare society as the
Danish with a lot of regulations we have no exact numbers, and we have no clear terms in our
legislation. Also you will often see different impairments within the same person.
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In a modern society where intellectual competencies are permanently needed for reading, using IT,
orientation, shopping you might experience many situations as a person being not-able for several
reasons. You are getting older, perhaps suffering from dementia or Alzheimer’s or you have a
diagnosed intellectual disability. For me this is not the main question. It is important not to neglect a
group of people just because we think they are too few. We all can end in the same situation, and often
I think that research on (intellectual) disability and aging can learn from each other ( Bickenbach:
2012).
I have worked with two different groups. One group is born with different intellectual disabilities.
Some of them have been in normal schools without much success. Often they can read a little, but
many are having problems with numbers and daily activities. Often they are outside the normal labor
market. Another group has brain damages later in life. It can be accidents or strokes. They have lived a
normal life before, but now they are in a kind of “home” – private, but with professional and
specialized staff - and they are not working either.
Different professionals are working with the two groups: social educators, physiotherapists, nurses,
occupational therapists. My main questions are e.g.: how do these professionals act in the actual
meeting with these citizens? And how do they feel prepared for that through education?
How can we know?
My method is mainly a phenomenological approach. I wanted to ask: ”What is it like”– and I wanted it
in a double perspective: first and foremost from the citizen with the intellectual disability and next from
the professionals ecountreing them. I have been inspired from different researchers to use a
phenomenological approach. Reflective lifeworld research (Dahlberg et al:2008) gave some direction;
existential phenomenological meant another inspiration and in general my starting point has been the
life world interview. I have in my analysis worked with Giorgi as my inspiration, trying to find patterns
in my big material consisting of interviews with citizens, professionals, observations from staff
meetings, from daily situations, and from different arranged activities.
I have also analysis made on documents related to the field: legislation, conventions, policy material
for different professional educations and for different organizations. My question is whether these
papers are consistent with observations and interviews from daily life.
Working with this approach means that you must be aware of your own attitude and values, be careful
about assumptions and conclusions, because your understanding is an ongoing process. Ethically this
research method is quite demanding. You are in a field with human beings who often have experienced
infringements. Some of them have limitations related to verbal communication and their physical shape
might also demand a very careful approach.
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My work can also be seen in a social philosophical perspective – again I see a lot of inspiration in Axel
Honneths work. Social philosophy analyses the barriers for the good life, and this is one of my main
interests. Giving voice to people in an area seldom heard and seen is one part of my work. Trying to
point out barriers for the successful encountering/meeting and the good life and perhaps indicate what
and how to change is another part of my intention.
I will here express my gratitude to those who have shared their precious time and many of their
thoughts with me. I know what efforts it have cost some of you!!And thank you to a lot of different
professionals to allow me to follow them in their daily work.
What did they tell me and what do I know now?
Dorte ( all names are changed) is in a wheelchair after a stroke and can use only one arm. She also have
some brain damage. She is very dependent on professional support in physical matters, and she
experiences infringement when professionals tells her, that the diaper sits perfectly when her own
experience is that there is a fold. She is the one to sit on this for many hours, and she experience this as
human and social negligence from the very person on whom an important part of her life depends. She
reacts when the professional tends to make it easy for herself. Dorte highlights one professional for
“Being a human being”.
Vera is another woman with a brain damage and with physical consequences that means that she needs
professional support getting out of and into her bed. I did not interview her, but some of the
professionals reflected on her situation. As other young persons she might like to sleep longer e.g. in
the weekends, but it was not possible. The situation about staff and the routines said when, and these
professionals thought that the structures meant infringement. Vera was not asked, and according to
Honneths terms of recognition in three spheres she might get care, but her right to decide on her own
about time and the daily rhythm was not respected. Honneth would describe the situation as reification.
Olav is a man around 30 years old. He is born with a brain damage, but he has a lot of competencies.
His time in different schools has not been too easy and not very fruitful, he says. But he has learned a
lot from the internet, he says himself. Now he wants to prove that he is able to learn more and his wish
is to be part “of the real labor market”, as he says – as a proof that he has been treated and placed in a
way that has neglected his rights. But because of his situation Olav cannot just start an education as he
wants. His way into that is full of administrative and bureaucratic procedures.
Sandra tells a story of not being seen as the person she thinks she is. She is born with an intellectual
impairment. When she is sad and depressed and need more professional support for a period, she and
the professionals experience that the municipality defines her. Even if the doctor recommends the
support, administrative staff tells that her situation should be understood differently – without knowing
her.
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Martin is in his fifties, and he has a brain damage after an accident, when he was in his teens. He sits i
a wheelchair. He is angry with the professionals for not understanding him the way he wants, and he
thinks it is because he is difficult to classify. As he says: I do not fit into their boxes!! His experience
with infringement is that he does not meet recognition in the social sphere with solidarity according to
Honneth. Martins uniqueness is not taken into consideration, he thinks. He lacks to have more
substantial or existential conversations, he says.
Anton is a young man with a brain damage after an accident on his bike some 10 years ago. He has
been in many different institutions since then, and now he has one big wish: to have more to say on his
own life. In Danish legislation self-determination is a central term. But it is not defined in any way.
Anton compares regulations and restrictions from a former institutional “home” as a straitjacket, and he
is eager about his self-determination. I think that his experience of this is very much related to
professional communicative skills. Not saying that professionals should trick Anton into something,
but they also have a responsibility that he does not get into dangerous situations.
Olav, Sandra, Martin and Anton reflect on the professional: is it possible to learn to be a good
professional through education ? And they have a feeling that some educated professionals do not have
the proper competencies and some would not be able to learn no matter how, and other professionals do
have the will and the attitude that they think is needed for the job – regardless of the level of education.
Sally is a young woman in her twenties born with an intellectual impairment. She manages to read but
numbers do not work for her. She has lived with her parents for many years, and in the interview I
heard different expressions telling me, that there might be an umbilical cord that needed to be cut. Sally
in fact was able to do more than they might realize, and she had for a while had a kind of job. But she
told me, that “I did not seem to thrive there”. By not using her own words, she gave me a signal that
this was what her parents have said, and at the same time she is so loyal to them. She proudly told me,
that she could go by train herself, but often her father insisted on driving her. I asked if they had praised
her for going by the train herself, but she said: they did not say a word.
Discussion and implications
According to Honneth and e.g. the German philosopher Markus Dederich people very close to us often
will be the first to show amnesia of recognition or commit violations/infringements. I have seen a lot of
very caring and responsible professional work done and a lot of dedicated professionals. I have not
asked if these citizens experienced violations. I do not want to “install” a term that they would not use
themselves. And I do not have any intentions to exhibit any professionals for not doing a proper job.
In the field you observe various dilemmas.
When legislation says autonomy and you in many ways are totally dependent on the professional, you
and the professional must both come to terms with this fact without making it a (unnecessary)
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dichotomy. And generally it is important for all professionals in this field to be aware of human rights,
conventions and social legislation.
Facing the need and dependence of the Other makes you as the professional the powerful – or are you
actually the hostage according to Emmanuel Levinás?
Can you as a professional recognize the Other without traditional efforts as e.g. work in return? And
can you use recognition as an ideological power? Because you know that these people might want to
please you more than anything else?
If you have a lot of documentations and standards to follow and you are satisfied in following these
because you then have done your duty – could this lead to amnesia of recognition and to reification?
Could a tendency in our educational system of valuing reflection (too much?) and having a lot of tests
lead to the same situation? That cognitive values and measurable standards would lead to a neglect of
acknowledgment of physical impressions and body language?
These dilemmas can be observed in the professional field working with people with intellectual
disabilities. At the same time Denmark has signed the Convention on the Rights of Persons with
Disabilities. It says Article 4 in general obligations (i): State Parties shall: promote the training of
professionals and staff working with persons with disabilities in the rights recognized in this
Convention so as to better provide the assistance and services guaranteed by those rights.
It can be discussed if the professionals in the field in Denmark have got the appropriate training for the
encountering/meeting with people with intellectual disabilities. Following the ideas from Axel Honneth
the recognition takes place in different ways and spheres.
Axel Honneth – a short presentation
Honneth is very much inspired from Kant, Hegel and G.H.Mead in his work with this theory. I am not
going to present the whole philosophical inspiration but will draw some lines, hoping to show that this
attitude could be a constructive and positive approach in professional work in general and especially
working with people with intellectual disabilities.
From Hegel he continues a three-dimensional distinction between 3 areas of our lives, each of them
contributing with specific values related to development of the good life: self-confidence, self-respect
and self-esteem.
At the same time Honneth installs a kind of eye-opener for us by telling how each of these 3 areas also
represents 3 different ways of violation, infringement or disrespect (German: Missachtung or
Kränkung).
Self-confidence, love and the private sphere
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This value is developed in the area of love in relationships with parents, close relatives, friends and
very close relationships. Self-confidence is crucial and comes from successful relations, and when this
trust in yourself develops you will gradually acquire a fundamental faith in your environment, in your
body and in sources (parents e.g.) serving your own needs.
These needs and patterns will be found across differences of cultural and historical contexts, Honneth
says. This is different from the next two types of recognition. They have both undergone and are still
undergoing historical transformations.
Disrespect and violation in the private sphere can among other symptoms be seen in lack of care,
violation of the body, abuse and rape. The persons mentioned above are all dependent on professionals
also in the private sphere.
Self-Respect, rights and the sphere of legally institutionalized institutions
This type of recognition has to do with rights and respect shown to every person as an autonomous
subject like everybody else. The mediation of this self-esteem has to do with legal rights, and with a
recognizable capacity to assert claims and exercise the universal capacity constitutive of personhood.
UN-Conventions are an example. Human dignity is essential and an increasing number of human
beings have these rights. Women e.g. are allowed to vote, but still we see too many human beings
being disrespected when not being treated as everybody else in terms of legal rights. People with
intellectual disabilities are not being asked about fundamental rights as where to stay and with whom.
E.g. Anton in the above mentioned examples experiences a need for demanding more selfdetermination.
Self-esteem, networks of solidarity and shared values
Above is the question of whether you are treated as every other person. Self-esteem involves the
feeling of recognition because you or your competencies are unique, special and particular. What
distinguishes you must be considered as valuable. Having a lack of self-esteem can be a feeling that
you have nothing to offer. Honneth says it is necessary to open the discussion about what is valuable. It
cannot always be work in a traditional sense, and he wants other competences and contributions to
count as valuable depending on the specific context and culture. Solidarity is important here, and
according to Honneth there must be shared concern, interests, or values in play. His concern is to
develop an open, pluralistic evaluative framework, where social esteem can be ascribed in a positive
atmosphere.
Which particular values are endorsed at a certain time in a certain community, is contingent and
shifting, but no member of society should be denied the opportunity to earn esteem for a contribution to
a common good. At the same time Honneth speaks about a demand to be realistic.
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Disrespect can be seen when ignoring people, not seeing them, and by excluding them. It can be
individuals treated like this as well as groups. Contexts and conditions change, and certain skills in the
labour market are e.g. considered not valuable any more. Individuals and groups feel a superfluity. This
could affect a person’s self-esteem, and even if you are intellectually disabled as e.g. Olav, he wants to
proof that he can contribute to the labour market.
Struggles for Recognition and roles for Professionals
Justice is more than a fair distribution of material goods. Exclusion, disrespect, degradation and other
ways of violating a person’s self-confidence, self-respect or self-esteem contribute to the debate.
Honneth puts another voice into this discussion. The bad experiences are shared by so many people,
that we must work collectively aiming at expanding social patterns of recognition.
Following Axel Honneths theory of recognition I see new aspects of the professional work. Social
workers, nurses, physiotherapists, teachers and pedagogues must be very much aware of their body
language, their voice and of all small signals telling about their attitudes towards people who are not
totally like themselves. You must use your body and all your senses as a tool in the understanding of
and meeting with the Other. Recognition in Honneths sense means an interest in and attitude to the
other human being involving a moral accept of this person. This goes along with a demand of
authenticity, and with a demand of a capability to ignore yourself as a person in favour of the person
whom you meet professionally (Honneth:2010).
You might ask if Honneths spheres include all aspects of life or you could imagine other spheres. He
knows that there might be weaknesses in his types, and exactly this field might show examples of this.
The professionals often meet the citizens in their private homes in the Danish institutional system and
having to do the professional work there. This means that you have the rights as a private person to
have your home as you like – but as a professional you also have some safety considerations to be
aware of. Here you see that the spheres are interfering.
Some of the German philosophers inspired by Honneth ask another question. Is it at all possible for the
professionals to show recognition if they as professionals are not recognized as a group themselves?
This could be another reason for some of the dilemmas in the field. If the professional work needed for
the field is very similar to the work of not-professionals it seems that your profession must fight for
recognition yourself (Kittay:2004; Asch:2004)
Conclusion
Infringement does not only take place in a battlefield or a fight. It also takes place within a field of care,
goodness and good will. Sometimes it is conscious – sometimes it is not. Situations with lack of
recognition should always be avoided because we are human and because we all depend on each other
in our interaction developing a good self-confidence, self-respect or self-esteem. Related to this
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specific group I think it is especially necessary to be aware of possible infringements and lack of
recognition. This group of people with intellectual disabilities is seldom heard in public. Their voice is
very weak and it means that politicians and the population in general lack knowledge and
understanding. This lack can be reflected in the legislation and in structures and rules to be followed
by the professionals. The educational system mirrors this, and then you have the experiences presented
in this paper. I think we need to reconsider these values and re-install them in many levels in our
professional system and in our society in general.
Literature
Asch, A. (2004): Anforderung an Assistenz s.58 – 67 i: Graumann, S.et.al (red) (2004): Ethik und
Behinderung. Ein Perspektivenwechsel. Frankfurt, Campus Verlag
Bickenbach, Jerome (2012). Oplæg på Service( social)-styrelsens konference d. 7.2.2012, Handicap
fremadrettet – viden og faglige perspektiver.
Bonfils, I.S.; Bengtsson, S. (2013): Danish disability research across half a century, pp13 – 37 in:
Scandinavian Journal of Disability Research, 15, sup 1
Bylov, F. (2010): Den store løsladelse – En kulturhistorisk beretning om empowermentbevægelserne
blandt udviklingshæmmede 1980 – 1995, 3 bind: 1 : det kulturelle opbrud, 2 : front-usikkerhederne, 3 :
afmagtens omslag til modmagt , Aarhus Universitet, 2010
Carlson, L. (2009): Philosophers of Intellectual Disability. A Taxonomy, s. 552 – 556 i:
Metaphilosophy, 3 - 4,
Carlson, L.; Kittay, E.F. (2009): Rethinking Philosophical Presumptions in Light of Cognitive
Disability, s.307 – 330 i: Metaphilosophy, 3 - 4
Carlson, L. (2010a): The faces of intellectual disability: philosophical reflections. Bloomington,
Indiana University Press
Carlson, L. (2010b): Philosophers of Intellectual Disability. A Taxonomy s. 315 – 329 i: Kittay, E.F.;
Carlson, L. red. (2010): Cognitive Disability and its Challenge to Moral Philosophy. UK: WileyBlackwell
Dahlberg, K., Nyström, M.; Dahlberg, H. (2008): Reflective lifeworld research. 2. Udg., Lund:
Studentlitteratur
Dederich, M. (2001): Menschen mit Behinderung zwischen Ausschluss und Anerkennung. 1.udg..
Rieden, Germany: Julius Klinkhardt
9
Dederich, M.(2013): Philosophie in der Heil- und Sonderpädagogik. 1.udg., Stuttgart: Kohlhammer;
Giorgi, A. (2011): IPA and Science: A Response to Jonathan Smith, s.195 – 216 i:Journal of
Phenomenological Psychology. 42
Giorgi, A. (2010): Phenomenology and the Practice of Science, s. 3 – 22 i: Existential Analysis. 21:1
Giorgi, A. (2007): Concerning the Phenomenological Methods of Husserl and Heidegger and their
application in Psychology s. 63 – 78 i: Collection de Cirp, Vol 1
Giorgi, A. (2000): Concerning the Application of Phenomenology to Caring Research, s. 11 – 15 i:
Scandinavian Journal of caring sciences, vol 14(1),
Giorgi, A. (2000): The Status of Husserlian Phenomenology in Caring Research, s. 3 – 10 i:
Scandinavian Journal of caring sciences, 14(1),
Grönvik L.(2007): Definitions of Disability in Social Sciences: Methodological Perspectives, Uppsala
Universitet
Honneth, A. (1995): The Struggle for Recognition, The Moral Grammar of Social Conflicts; MIT Press
Honneth, A. (2000): Das Andere der Gerechtigkeit: Aufsätze zur praktischen Philosophie. Frankfurt
am Main: Suhrkamp;
Honneth, A. (2001): Sphären reziproker Anerkennung: Größe und Grenzen der Hegelschen
Sittlichkeitslehre, s.5 – 36 i: Nordic Journal of Philosophy, Vol.2, No1, Philosophia Press
Honneth, A. (2003a): Kampf um Anerkennung: zur moralischen Grammatik sozialer Konflikt: mit
einem neuen Nachwort. Sonderausgabe zum 30jährigen Bestehen der Reihe Suhrkamp-Taschenbuch
Wissenschaft, Frankfurt am Main: Suhrkamp;
Honneth, A. (2003b): Unsichtbarkeit. Stationen einer Theorie der Intersubjektivität, Frankfurt,
Suhrkamp
Honneth, A. (2003c): Behovet for anerkendelse. En tekstsamling redigeret af Rasmus Willig, Hans
Reitzels Forlag
Honneth, A. (2004a): Anerkennung als Ideologie, s. 51 – 70 i: Westend, Neue Zeitschrift für
Sozialforschung 1:2004
Honneth, A.( 2004b): ”Sozialphilosophie zwischen Kritik und Anerkennung” i: Halbig, Christoph,
Quante, Michael (red.)( 2004): ”Münsteraner Vorlesungen zur Philosophie”, Bd.5, Hamburg, LIT 204,
Münster
10
Honneth, A.(2005): Verdinglichung: eine anerkennungstheoretische Studie. 1. udg., Frankfurt am
Main: Suhrkamp;
Honneth, A. (2006):Kamp om anerkendelse, Hans Reitzels Forlag
Honneth, A. (2007): Disrespect: the normative foundations of critical theory. Reprinted udg. Oxford:
Polity.
Honneth, A.; Rössler, B. red. (2008): Von Person zu Person. Zur Moralität persönlicher Beziehungen.
1.udg., Frankfurt am Main: Suhrkamp;
Honneth, A. (2009): Arbeit und Anerkennung. Versuch einer Neubestimmung s. 2013 – 228 i: Schmidt
am Busch, H.C.; Zurn, C.F.( red) (2009): Anerkennung, Sonderband 21, Deutsche Zeitschrift für
Philosophie, Berlin, Akademie Verlag
Honneth, A. (2010): Das Ich im Wir. Studien zur Anerkennungstheorie. Berlin: Suhrkamp taschenbuch,
wissenschaft;.
Honneth, A. (2012): Erziehung und demokratische Öffentlichkeit. Ein vernachlässigtes Kapitel der
politischen Philosophie, s.429 – 442 i Zeitschrift Erziehungswissenschaft 2012:15, Online publiziert
07.07.2012
Kittay, E.F. (2004): Behinderung und das Konzept der Care Ethik s. 67 – 80 i: Graumann, S.et.al (red)
(2004): Ethik und Behinderung. Ein Perspektivenwechsel. Frankfurt, Campus Verlag
Kittay, E.F. (2005a): At the Margins of Moral Personhood, s. 100 – 131 i: Ethics, (116), October 2005
Kittay, E.; Jennings, B.; Wasunna, A. A. (2005b): Dependency, Difference and the Global Ethic of
Longterm Care s. 443 – 469 i: The Journal of Political Philosophy, 13(4)
Kittay, E.F.; Carlson, L. red. (2010): Cognitive Disability and its Challenge to Moral Philosophy. UK:
Wiley-Blackwell
Lorentzen, P. (2006): Slik som man ser noen: faglighet og etikk i arbeid med utviklingshemmede. Oslo:
Universitetsforlaget.
Lorentzen, P. (2007).:Fra tilskuer til deltager: samspil og kommunikation med voksne
udviklingshæmmede. 1. udg. Aalborg: Materialecentret.
Lorentzen, P. (2013): Ansvar og etik i socialpædagogisk arbejde. 1. udg. Kbh.: Akademisk Forlag.
Slettebø, Å. (2002): Strebning mot pasientens bedste. En empirisk studie om etisk vanskelige
situationer i syjepleiepraksis ved tre norske sykehjem., Oslo Universitet.
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http://www.un.org/disabilities/documents/convention/convention_accessible_pdf.pdf, 31.5.2014
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