Paper Seventh International Congress of Qualitative Inquiry
May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
From an ethically stuckplace to
revolutionary victory
- Collective memory work with mothers of diagnosed children
Line Lerche Mørck (together with Heidi Birk Carlsen, Connie Cramer Jensen, Anja
Grøndahl & Irene Nørgaard)
The paper discusses methodological and ethical challenges connected with collective
memory work on memories from one’s own family. Research into children
categorised with autism, ADHD or learning disabilities often focuses on diagnostics,
including how to deal with kids in school and at home. These ‘diagnostic problems’
are described in a terminology of ‘problems’ or ‘lack of abilities’, which may
stigmatise and reproduce the marginal positions of the diagnosed children and their
mothers. Sensitive or personal research topics like those dealt with in the present
study often lead to anxiety about being stigmatized. Like other collective memory
work (Farrar 2007) our research must deal with ethical dilemmas of being too painful
or too sensitive to publish. In more general terms, this paper is about an ethically
stuck place, in which researchers need to find a way beyond that builds on ethical
considerations and actions that we consider relevant for further research into people
in marginal positions.
The original draft of this paper was discussed and rewritten together with the group
of five researchers/mothers. As a collective memory work group we experienced that
the ethical discussions about sensitivity, confidentiality and anonymity changed into
discussions of how to make revolutions, and how we as mothers wished to share the
research results and spread ideas of how to act expansively, e.g. by using the results
at schools. But how did this change come about? The paper introduces the
methodology of collective memory work with mothers and ethical ways to deal with
these dilemmas of sensitivity. It objectifies steps beyond the fear and shows how to
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Paper Seventh International Congress of Qualitative Inquiry
May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
deal with anxiety related to marginal, sensitive feelings of stigmatisation, both as part
of the research process and as content of memories. The paper explores this road to
the experience of a “revolutionary victory”. The paper builds on a methodological
memory work case, presenting the processes of ethical reflection as well as
deconstruction and reconstruction that we experienced as a meaningful and a
revolutionary way beyond stigmatisation.
The research discussed in this paper has one main focus: “What do diagnoses do to
us?” The “us” includes the mothers, the fathers, the children, the rest of the families
and the professionals who collaborate to support the development of the children
“acquisitioned”1 by a behaviour-based diagnosis. The empirical material used in the
research project currently comprises transcribed reflections of four meetings and
analyses of five collective biographies. These include analyses of normativities (first
and third person discussions of rights and wrongs) that played a role in the
stories/biographies and were generalised as rationalities at play as well as analyses of
the changes in historical and cultural contexts in which diagnostic thinking about
ADHD, autism, gifted children, and behavioural and learning disorders are
constructed and acted on.
We (the five mothers) who are involved in the project as researchers all have
academic qualifications as researchers and/or (educational) psychologists; three are
students of educational psychology. We all have a history of challenging the practice
of professionals. Below we discuss ethical aspects, including reasons drawn from the
methodology of collective memory work for writing about the mothers and their
stories in the third person, for example: “the mother” in contrast to “I”, “we” and
“us”.
The use of the term “acquisitioned” here is inspired by the article “Acquisition of a child by a
learning disability” (McDermott, 1993).
1
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Paper Seventh International Congress of Qualitative Inquiry
May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
Research methodology
This paper contributes to a critical, collective and practice research methodology to
explore both problems and possibilities, including ways to partly transcend
marginalisation (Kristensen & Mørck, 2011, in press; Mørck, 2010; Mørck, 2011).
The existing critical and practice-oriented studies tend to focus on the school or on
institutional practice with diagnosed children. These studies typically represent the
perspectives of professionals and occasionally the perspectives of the children; only
rarely are the perspectives of parents included. But there are exceptions to these
tendencies; although Fleer & Hedegaard (2010), Dreier (2008) do not go into the
diagnostic discussions, they do analyse parents’ and children’s different positions and
their standpoints on problems in their everyday lives across contexts.
The collective memory work methodology (Haug 1987, 1997), also called collective
biography (Davies & Gannon 2006), is based on the memories of the research
participants, who are also the researchers. Collective memory work represents an
attempt to identify the common threads, i.e. the different viewpoints and rationalities
that have shaped the collective memories. The aim of such an exercise is to move
from the mothers’ own private embodied knowledge to a set of more collective and
theoretically reflected insights into the dimensions of dilemmas, problems and
possibilities the mothers are collectively facing.
Nothing has yet been published on collective memory work conducted by the parents
of diagnosed children. Reasons for the lack of research on this particular area might
be that many researchers and parents hesitate to engage in collaborative research that
involves shared memories about one’s own family and that some researchers may shy
away from the methodological challenges and the difficult ethical dilemmas.
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Paper Seventh International Congress of Qualitative Inquiry
May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
Research from subject standpoints, discussing collective biographies in the third
person
Our research project is grounded in a Danish-German critical psychology tradition
(see Mørck & Huniche 2006). This particular tradition of critical psychology (also
called the Berliner School) builds a conceptualisation of “psychology from the
standpoint of the subject” (Holzkamp 1983) formulated as a critical alternative to
mainstream psychological theorising. The core of Holzkamp’s critical stance is the
argument that mainstream psychology serves the interests of capitalist/bourgeois
society by individualising problems and instigating personal work on the self as a
solution to psychological problems. Mainstream psychology is thus criticised for
resulting in personal compliance rather than in active engagement with changing
repressive societal conditions. The Danish-German critical psychology is conceived
as an alternative methodological and analytical strategy that builds on the study of
first person perspectives (rather than “expert” third person perspectives) with the aim
of enabling personal and collective emancipatory practices through practice research.
Researching from a subject standpoint and discussing collective biographies in the
third person (Haug 1987: 45) could seem like a methodological contradiction – with
ethical dimensions.
But as shown below the group did not experience it as a contradiction in practice as
we discussed collective reflections at meetings that could very easily be combined
with sharing first person standpoints. Nissen (in press) also argue that a subject
standpoint is never a clear-cut singularly first person standpoint; it will always be a
result of an intersubjective process. Furthermore, the subject standpoint is
constructed collectively in the joint ventures between the researcher and the involved
subjects, who are ideally involved as “co-researchers”. The collective biographies are
written in the third person. According to Haug (1997) using the third person can help
participants explain themselves not as self-evident but as unknown persons. It opens
up to a description in detail. In writing in the first person, a great deal is taken for
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Paper Seventh International Congress of Qualitative Inquiry
May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
granted, omitted or considered unimportant or embarrassing. Writing in the third
person distances the writer from the memory (Haug 1997: p. 3-4), which is ethically
helpful in dealing with very personal and/or sensitive memories. The strategy of
using the third person emphasises that it is not the one who is writing the memory
that is the subject of investigation, but the text itself.
The mothers collectively discussed what it meant for the analytical process and the
discussions to write and present biographies in the third person. Sometimes we
slipped into talking about “I” or “you”, when we, according to the memory work
method, should have said “her”. But we agreed that we preferred to start by
producing a kind of reflective distance to the stories; discussing the biographies in the
third person (in line with Haug and Davies) and afterwards, in another round, we
presented our first person perspectives on what actually happened, contextualising the
stories, as well as using a first person “I” when discussing similarities and differences
between the memory and our life experiences. According to ideals within memory
work methodology as well as critical psychology, all the “others”, including the
professionals (outside the family), should be constructed in such a way that we could
try to see things from their standpoint and get closer to their first person perspective;
in other words, we should try to understand their reasons to act (Dreier, 2008). But
sometimes we could not get very close to the first person perspectives because we
lacked knowledge. We discussed ethical dilemmas and procedures for (not) involving
partners and children in the project of producing collective memories. Some mothers
chose to share their written memory and publications (this paper) with their husbands
to make it a more collective family project that also included both parents to some
degree. For example, one father read a memory in the first version and pointed out
that he could not remember some of the described perspectives (e.g. the referring
teacher’s perspective). The mother said that these perspectives were actually taken
from the diary notes she had written because it was such a difficult time. The husband
also commented on one particular place where his perspective varied a great deal
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Paper Seventh International Congress of Qualitative Inquiry
May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
from the mother’s and included his written perspective in a footnote. The mother
shared these reflections at the meeting with the other mothers, and used them,
together with the comments of the mother group, to re-write her memory.
Emancipatory research - movements beyond stigmatisation
Following Holzkamp (1983) subjects are characterised by living in societal structures
with conditions that create possibilities and constraints in their lives. Critical
psychology as well as collective memory work is a theoretical as well as an
emancipatory and political project (Mørck & Huniche 2006: 3, Haug 1987: 35).
In our research one ethical issue was what to call the mothers and their children. For
example, one of the mothers hesitated to join the group to begin with because she was
afraid of being categorised as “a mother of an ADHD child”. She had struggled hard
to get out of that box and her son did not have the diagnosis anymore; they had
succeeded in moving beyond it. We began and ended each meeting with an ethical
round and ethical collective reflections. In the round at the first meeting the mother
described her worries about joining the group: “What does this do to me? The anxiety
of getting put in a box – not by you, but more culturally” (M1. p.20).
She referred to an experience of being put in a box earlier in her life:
“I felt totally locked up in this box: “mother of a child acquisitioned2 by ADHD”. I
could not breathe. I just had to get out of that box, and I felt that really physically – I
had to get out of it – it was almost claustrophobic. And it is that fear I have now: Ohoh, now I am going to end up there again”. (..) “Then you are suddenly the mother of
a child with ADHD even though the child no longer thinks of himself as that and you
do not think him like that”(M1, p. 20).
She continues:
She uses the Danish terms ”ramt af ADHD”, which also could be translated: ”hit by ADHD” meaning that it is
something that suddently hits you (in contrast to something ”you are”, or something within you).
2
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Paper Seventh International Congress of Qualitative Inquiry
May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
“I would like to make a revolution in relation to getting out of this, so it does not do
things – so that we change or shift the norms a little in relation to what is right and
what is wrong” (M1, p. 21)
This was a difficult ethical dilemma because it was very hard to avoid the diagnostic
categorisation in the project, as the (sub)title of this paper reflects. How should we
collectively and ethically deal with her anxiety? How can we produce revolutionary
research of relevance for families who are or have been “acquisitioned” by
behaviour-based diagnoses without putting (yet again) mothers and their children into
boxes?
Ethical actions and steps beyond stigmatisation
At the first meeting this mother shared an anxiety of stigmatisation, but through our
discussions at the first and second meetings we moved beyond this fear. The mother
mentioned at the first meeting that it was very important to her to verbalise this issue,
which she did as part of our ethical round at the end of the meeting. Another
condition that helped us deal with this ethical dilemma was that all mothers agreed on
wanting to shift the norms related to right and wrong. The mother’s addressing of the
issue at the first meeting led to a collective discussion of the repertoires that rule the
ADHD field. We discussed how a mother of a diagnosed child can easily feel
different or “in the wrong” within this field. We reflected on how this particular
group was composed of mothers who had all changed over time and who had
experienced very different standpoints and positions during their lifetime: From
having a critical “I don’t like diagnoses” attitude to thinking “We need to use the
diagnosis to open up new action possibilities”, acknowledging that a diagnosis in
some ‘stuck places’ “may be a help” and/or “a relief” and may often bring about
some change, and that test results as part of the diagnosis processes may also “bring
hope”. With regard to standpoints about medication the group members also had very
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Paper Seventh International Congress of Qualitative Inquiry
May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
different positions, from “appreciation of the medication” over “considering the
possibility” to “very critical” or “against medication” and finally, “been there, done
that” and having “moved beyond medication”. Verbalising all these very different
experiences and positions was a way to deconstruct and soften the tendencies of
certain rights and wrongs within the broad field of behaviour based diagnosis and
also within this local practice community of mothers.
Another important step beyond the dilemma was the mothers’ choice of biography.
The mother who feared being put in a box did not write a memory of her son; he was
only a minor character. Instead she wrote a memory that dealt with the dilemma of
stigmatisation and the struggle to move beyond. The memory was an interesting
alternative because it involved walking the margins (Khawaja & Mørck, 2009) and
expanding them. This particular memory could point to alternative routes instead of
mainly reproducing the “putting into boxes”. She called the biography: “The memory
of when the diagnosis did something to her”.
At the second and third meetings the mothers did collective deconstructions of the
written memories, following the memory work schemata (Haug, 1997). But the
mothers also expanded the memory work methodology with a collective round of
reflections inspired by critical psychology. We took a round, asking about plots and
places that were difficult to understand in each memory. And we asked the authors of
the memories to tell more about the contexts of the biography, including the present
states and life situations of the mothers, the children and the rest of the families. The
transcribed reflections thus also included the mothers’ first person perspectives of the
specific contexts, positions and standpoints (Dreier 2008) from which the mothers
talked and wrote. The mothers also stated how each particular memory had parallels
to experiences in their own present life situations and life histories and discussed how
they differed from the personal experiences in the group. At the end of the round each
mother related each memory and the collective discussions to different theories,
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Paper Seventh International Congress of Qualitative Inquiry
May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
especially applying critical psychology and social practice theories in preliminary
analyses of each collective memory.
The memory of the mother was analysed and deconstructed at the third meeting. In
the deconstruction the “initial thesis” was articulated as: The limitations of diagnosis.
How diagnoses are powerful objectifications3 (Nissen in press: 106); which
especially drew attention to the negative objectifications related to experiences of
violation4 and stigmatisation of the child and the family. The collective deconstruction reflected contradictions and processes of distancing through irony: As a
course leader who coached parents “it was smart to be the mother of a child
acquisitioned by ADHD”. It brought about the “you/we-know-what-it-all-is-aboutatmosphere in the room” (M3: 1-2). But the distancing irony of the memory also
indicated that it was too smart and that the mother had to get out of this “mother of a
child with ADHD” box.
The mothers subsequently analysed the self-constructions and actions of the various
characters in the memory and they noted that especially the mother was very active
and reflective: “A mother of action potency5” (M3: pp. 14-15).
This was a good example of realisation of the goal of the mother collective: to use
research “to make a revolution”. The biography was deconstructed from “limitations
of diagnosis” to a “counter-narrative6”, an “empowerment narrative”. (M3, p. 14).
The reconstruction process changed the initial thesis statement of authors’ meaning of
limitations in diagnosis to a narrative of how to actually break with the powerful
stigmatisations of diagnosis through active action, reflection, and expansive learning
”This moment of estrangement in objectification may lead to not only alienation [German: Entfremdung], but also the
exotization [German: Verfremdung – cf. Brecht, (1982)] that facilitates creativity and reflexivity. Thus, looking at the
differentiation to, and exchange between, collectives, helps us see that the transformative and transcendent character of
production, the way it overwhelms us and supersedes and revises our intentions, is not only a logical implication of the
endlessness of nature in the face of which we should be humble; it is also an implication of the way objectification
passes through materiality as a thingness which lies between us.” (Nissen in pess: 106)
4 ”overgribende”.
5 “En handlekraftig mor”.
6 En “modmagt-fortælling”
3
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Paper Seventh International Congress of Qualitative Inquiry
May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
in collaboration with teachers. When we came to this point the mother cried out:
“YES!” and held up her clenched fist in victory (M3: p. 14).
Litterature
Axel, E. (2011). Conflictual Cooperation. Nordic Psychology 2011 no. 3.
Dreier, (2008). Psychotherapy in Everyday Life. Cambridge University Press.
Davies & Gannon (2006). Doing Collective Biography. Open University Press.
McGraw – Hill Education.
Farrar, P. D. (2007). Too painful to remember: Memory-work as a method to explore
sensitive research topics. University of Technologu, Sydney.
Fleer, M., and Hedegaard, M., (2010). Children’s development as participation in
everyday practices across different institutions: A child’s changing relations to
reality. Mind, Culture and Activity, 17 (2) April-June, 149-168.
Haug, F. et al (1987). Female sexualisation: A Collective Work of Memory. UK,
USA: Verso
Haug Frigga (1997). Memory-work as a Method of Social Science Research: A
Detailed Rendering of Memory-Work Method.
http://www.friggahaug.inkrit.de/documents/memorywork-researchguidei7.pdf . Side
1-29
Khawaja, I. & Mørck, L. L. (2009). Researcher positioning - when researching
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Kristensen, K. L., & Mørck, L. L. (2011). Overskridende Læring - ADHDproblematikken som eksempel. I: D. M. Christiansen, Pedersen (Ed.).
Specialpædagogik: En grundbog. Hans Reitzels Forlag, side 113-125
McDermott, (1993). The acquisition of a child by at learning disability. I: Chaiklin, S.
& Lave, J (red). Understanding practice: perspectives on activity and context.
Cambridge University Press, side 269-305
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May 18-21, 2011, Illinois, US. Line Lerche Mørck, llm@dpu.dk.
Mørck, L. L. (2010). Expansive learning as production of community. In W. R.
Penuel & K. O’conner (Eds.), Learning Research as a Human Science National Society for the Study of Education Yearbook (Vol. 109, 1).
Mørck, L. L. (2011). Studying Empowerment in a Socially and Ethnically Diverse
Social Work Community in Copenhagen, Denmark. Ethos, 39(1), 115-137.
Mørck, Line Lerche (2006). Grænsefællesskaber- læring og overskridelse af
marginalisering. Frederiksberg C: Roskilde Universitetsforlag. Henvis til
hjemmesiden – for engelsk oversættelse af tre kapitler.
Mørck, L. L., & Huniche, L. (2006). Critical psychology in a Danish context. Annual
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practice with youth in Copenhagen. Palgrave/McMillan.
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