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Co-research: The making of an alternative knowledge
by
David Epston
1
Chapter 16 in 'Narrative Therapy
and Community Work: A conference collection' Dulwich Centre Publications 1999.
Co-research was a term I concocted in a very specific set of
circumstances to describe to myself and others a practice at considerable
variance to ‘family therapy’ of the late 1970s. Around that time, I began a very
valued association with Dr Innes Asher, a respiratory physician at the
Department of Paediatrics, University of Auckland. We began to collaborate
around those children, adolescents and their families who were suffering the
experience of life-threatening, chronic and often disabling asthma. Such
suffering, as I was to learn, had no ‘voice’, no vocabulary and no place in the
biomedical discourses. If anything, it was rigorously excluded. A ‘good patient’
was calm and enduring, and such manners were certainly expected of the family
members concerned. But such a life-threatening asthma, referred to as ‘brittle’,
could happen almost any time day or night, seemingly with little or no warning.
Ronny’s story
The first young man I was to meet was twelve. By then, Ronny had
suffered numerous respiratory arrests, each one threatening his life, following
his first arrest on the occasion of his eleventh birthday party. What made
matters grave was that he had also started cardiac arresting, although his heart
according to the cardiologists was ‘as strong as an ox’. His parents, who lived
a 60-kilometre ambulance ride away from the Children’s Hospital, could only
submit to two sleepless nights before Ronny insisted on returning to the
hospital. He was so concerned for his parents’ well-being. Such was the
hospital’s concern for him that a suggestion had been floated that he live in
intensive care. Everyone worried that he did not have long to live.
In fact, I noted when talking to hospital staff involved in his
intimate care, they would betray their fears for him without even knowing it - a
slight tremor at the mention of his name. However, as I canvassed everyone, a
nurse on the night shift told me a story I will never forget. She has to remain
nameless because by the time I realised its significance, she was lost in the
regular rotation of nurses throughout the hospital.
One night when Ronny rang his night alarm, she raced to his
bedside and found him in great distress. This usually signalled an arrest.
However, at the same time, she was summoned to another alert which had priority
and there were no other nurses available at that moment. She had to leave Ronny.
She called upon all her courage, looked Ronny straight in the eye and shouted
‘STOP IT!’ They were both stunned by the fact that his distress immediately
abated and she was safely able to leave him. Although this had been duly noted
in his ‘medical chart’, it went unattended to, a mere curiosity. This incident,
considered at some length, became foundational to a ‘courage practice’ that was
trialed with consent under the most hazardous conditions. I was permitted, in a
manner of speaking, to give him asthma attacks. I had noticed that my mere
mentioning of the word ‘cough(ing)’ was more than sufficient to bring on extreme
wheezing. With Dr Louise Webster on medical guard behind Ronny and me, we
commenced to ‘arrest arrests’. For example, when he was mildly distressed, I
would offer him a handful of coins and ask him to pick one. I would then ask him
to read the date on it. My next question, ‘Ronny, what was it like to arrest an
arrest?’, was met by great bemusement. On each trial, I allowed his wheezing to
worsen until the final occasion. He began to lapse into semi-consciousness,
turning an awful blue. Dates on coins were no longer of any interest. I seized
his hand, gently squeezing it, repeating ‘Feel my strength passing into your
mind and body’. I sensed I was losing him at the same time as my strength was
running out. With my last gasp, I fiercely squeezed his hand and shouted ‘STOP
IT!’ To everyone’s amazement, he did exactly that and stopped it. Obviously
confused, as a full day had been dedicated to ‘arresting arrests’, he jumped to
full attention and rushed out of the room like the Mad Hatter saying that he was
late for an important x-ray date. The nurses from the nearby nursing station
rushed in, seeking information. Louise shouted, ‘He did it!’ and, like wildfire,
the news spread around the ward and beyond.
Ronny was soon able to return home to live, had only one further
hospitalisation, and was able to resume a normal life. Innes and I have kept in
touch with him one way and another ever since.
Acknowledging alternative knowledges
This experience with Ronny was formative in
convincing me there were ‘alternative knowledges’ to the more conventional
treatments for which Ronny had exhausted each and every possibility. What was
particularly significant was where one might seek such knowledges - the
metaphorical space created through an externalising conversation between the
person/family/carers and the illness/disability.
Family therapy theory and practice in the late 1970s and early
1980s had also considered this, but I found them at worst ‘family-blaming’ and
at best ‘family suspicious’. Lyman Wynne summed up this state of affairs in
1992:
The family system explanations of illness can be regarded as
an alternative version of the societal and traumatic life-event
interpretations of illness. In each of these versions, not the individual but
a larger social unit (family or society) is viewed as ‘disturbing’ or ‘sick’.
The hypothesis is that family systems are causative in generating or
maintaining symptoms provided much of the impetus for starting the field of
family therapy. (Wynne, Shields & Sirkin 1992, p.13)
Concerning life-threatening asthma whereby family members had
been involved in numerous life-saving incidents, either directly by
administering CPR or indirectly by calling ambulance or intensive-care services,
for me to operate on a family-suspicious basis seemed a grotesque travesty of
benevolence, let alone a professional practice of therapy. I became determined
to find an alternative frame of reference so I might meet these people with
compassion rather than suspicion. First of all, I took ‘suffering’ to be the
designated ‘problem’. And by doing so, ‘suffering’ more or less became
everyone’s problem. And such suffering was beyond the scale of anything I had
known close up. Unfortunately, there was more to come.
From empathy to ethnography
In the late 1980s, I felt I had no choice whatsoever but to
further this endeavour to find an alternative when I met the membership of the
Dystrophic Epidermolysis Bullosa Research Association. Although this is
retrospective, I believe I got the word ‘research’ from sheer plagiarism. When I
was first contacted by a colleague, Nick Birchall, a paediatric dermatologist, I
recall being at pains to first learn how to pronounce it and then find out what
in the world ‘DEB’, as it is known, was. He informed me it was a very rare
genetic disorder variably affecting around 70 individuals in New Zealand. What I
did remember most vividly was his description of a missing gene that
metaphorically meant that it was like concrete without reinforcing steel.
Without such reinforcement, the skin is extremely vulnerable to blistering or
rupture at the slightest pressure or touch. The pain associated with this was so
excruciating that lancing by razor blade is the only means of relief. Because of
the many wounds, parents have to debride their children’s skin before bandaging
it, which is felt to be as painful as intentional torture.
There was no way whatsoever I could have been prepared or could
have prepared myself for the prospect of parents being obliged daily to act
towards their children in ways everyone knew was inflicting excruciating pain.
Young children could not be expected to mediate such sensations into dignified
suffering. The pain was just too painful to be distinguished as benevolence or
care. I found myself just running out of empathy - if that is the capacity to
step into another’s shoes. This was truly outside of what I could conceive. Nor
could I fathom what it might be like to revive a comatose child who was
arresting and how such a hazard could ever become a part of my everyday life. I
felt like an alien, and the very best I could hope for was a very rough
translation, however uncertain and circumscribed by the limits of my own
experience.
I had to ask myself - to what extent can a person participate in
another’s feelings or ideas? After all, empathy rides on the faith that the
grounds of experience between myself and others are similar, such that I can
know what another is feeling, based on what I might feel in such a situation.
But what if the situation remains beyond your grasp, despite your best efforts
to imagine yourself into it?
I decided to take ethnography (or, better put, the doing
of ethnography) as my means of operating. Rather than thinking of myself as
possessing some ‘expert knowledge’ that I might apply to those consulting me, I
made seeking out fellow-feeling as my primary concern. After all, in every
instance, the various expert knowledges had exhausted themselves of their very
own expertness or frankly admitted that they could do no more than palliative
care. For me to presume to substitute some sort of ‘psychological’ expert
knowledge would have been insolent and immediately rendered me ‘suspicious’. By
the same token, my ‘suspiciousness’ could very well have been experienced as
blaming, as had often been the case, despite my best efforts to redress that.
Other questions I was asking myself were:
-
How could I request people in peril to stop seeking rescue but
rather turn to themselves and each other?
-
How might I proffer something other than a ‘miracle cure’ to
take the place of the forsaken ‘medical cure’?
-
How could we all take up different relationships with each
other and the problem of suffering?
I had observed that the discourses of biomedicine and the
discourses of miracles produce patients and petitioners who fervently looked
beyond themselves for ‘cure’ and/or ‘salvation’.
I chose to orient myself around the co-research metaphor both
because of its beguiling familiarity and because it radically departed from
conventional clinical practice. It brought together the very respectable notion
of research with the rather odd idea of the co-production of knowledge by
sufferers and therapist. What made this possible, in the first instance, was a
fairly thorough-going externalising conversation, one in which the problem was a
problem for everyone - and here I included myself. Here’s where I parted company
from the disinterested ethnographer. This has led, and continually leads, to
practices to discover a ‘knowing’ in such a fashion that all parties to it could
make good use of it. Such knowledges are fiercely and unashamedly pragmatic.
Ashley’s story
Ashley was not yet three years old when his parents, Colin and
Kathy, approached me about his severe dystrophic epidermolysis bullosa. They
sought for me to prescribe his future and theirs, something I was quite
unwilling to do. Instead we commenced to co-produce a sufferer’s or insider’s
knowledge under the umbrella of reducing their suffering in general.
The Dystrophic Epidermolysis Bullosa Research Association became
a precedent for what I have come to refer to as a ‘community of concern’. I
commenced advertising co-research practice in a very scrupulous and transparent
fashion. It was advantageous, to be sure, that they themselves used ‘research’
in the very naming of their association. So difficult and rare were their
circumstances that many swore they owed their very lives to the existence of
their annual conventions and the forum of their quarterly magazine. With
everyone’s consent, I made it my practice to circulate the letters I wrote to
one family around their community, thanks to their newsletter. At the annual
convention, a day would be set aside for co-research. In the morning, I would
review whatever co-research projects were underway (for example, the project
Kathy and Colin and I had evolved, which I will show you immediately) with all
their ‘community’ of around 200 people gathered around us. In the afternoon,
groups would break into what they ironically called ‘case conferences’, made up
of children, families, extended family, friends, and professionals to reflect on
the ‘knowledgeableness’ of the family concerned. Such a knowledge would then be
considerably enriched. Their own knowledges - often miles apart - were often
evoked when referencing their own experiences with DEB against the
co-researching agenda. Thrilling surprises were always in the air, which often
set the co-research agenda for the next year. To bring this all down to earth,
here is the first co-research letter circulated through the DEBRA Newsletter.
Dear Colin, Kathy and Ashley,
It was very pleasing meeting up with you and starting a
conversation which I hope we will continue in the future. On my part, I am just
getting to grips with DEB and the particular problems it presents to young
people and their families.
First of all, I think it is important for me to set out my
thoughts for your consideration. I am totally unconvinced that the answers you
are seeking for Ashley exist within any professional knowledge. As far as I can
see, medical knowledges don’t apply themselves to the day-to-day problems
confronted by Ashley, yourselves and your community. Many people seek that
day-to-day knowledge from doctors and are sadly disappointed and at times angry.
My position is very dissimilar. I propose that the knowledge, so particular to
Ashley and yourselves, be developed by yourselves in co-research with me. That
is, of course, if you wish my assistance. Co-research implies, firstly, that the
answer is unknown but, secondly, that it can only be discovered by an
experimental attitude on a day-to-day basis. Co-research is also based on the
belief that parents and young people can find their own solutions to some of the
effects of their medical problems, or at least reduce the effects of such
problems in their lives and that of their families. An experimental attitude
draws upon something parents already do, and that is the close observation of
their children and their activities, noting small differences. This
approach sponsors flexible solutions, ones that fit the particular developmental
circumstances of young people and their families.
We discussed a number of points, some of which I thought might
profit by further consideration, both by you and me. Kathy and Colin, you both
would like to know conclusive answers to some very important questions regarding
Ashley. I urged you against seeking this kind of information. Instead, I
counselled you to raise a number of questions to your conscious awareness, all
the better to experiment with. Instead of conclusions, I propose balance. I have
found that those people who seek conclusions blind themselves to chance
discoveries. They want the right answer when, in fact, there is no
right answer. What happens, then, is for parents to choose
parent-supervision as the right answer, and if or when that doesn’t work, to
choose child-supervision in its place. All the time the search is for the
right answer. An experimental approach concerns itself with balance or,
better yet, finding the balance between, say, parent-supervision and
child-supervision (self-supervision). This allows for flexibility and new
learnings. For example, in some circumstances, say learning a new skill, it
would be more helpful to start out with 95% parent-supervision but then start
tapering off so that by the time it becomes an old skill, the balance is now 95%
Ashley supervising himself and his parents supervising him 5%. These balances
will also reflect Ashley’s age and stage and current levels of ability. So there
is no right answer ; there is only balancing, and
that is an act that everyone can enter into.
We talked in general about three basic dilemmas that need to be
balanced if Ashley and his family are not to become unbalanced (and I have
certainly seen that happen with young people who must struggle with chronic
health problems):
1) Parent-supervision/child-supervision.
The hazard of many young people and their families, as we
discussed, is the tendency for parents to supervise their children well past the
time when their children, if they did not have health problems, would be
supervised. You must have seen many examples of parents of chronically ill
children being vulnerable to over-supervision. Many of these children are
particularly vulnerable to inviting their parents to over-supervise them at the
same time as under-supervising themselves. This can lead to a ‘disabling’
vicious cycle, with parents supervising them more and their children supervising
themselves less. The parents can forget to supervise their own lives and, as a
result, they often become problem-centred and the family life (or what’s left of
it) revolves around the problem. The opposite or ‘enabling’ virtuous cycle sees
parents inviting their children to supervise themselves more and, by doing so,
they invite their parents to supervise them less. Now, Ashley is only 3, and in
the above I am talking about children aged 1 to 17. Still, from speaking with
you, I could see how you were giving Ashley some ‘space’ to supervise himself
(and pay the consequences). Of course, your parent-supervision comes in, say if
Ashley unwisely supervised himself and the consequences of his decisions were
too harmful to him. Still, with DEB, I guess the only way to learn is the hard
and painful way and the sooner he is able to decide wisely, the better. The
above is merely a framework for a 3-year-old Ashley, remembering that the
balance for a 4-year-old Ashley will be a bit different.
2) Taking pressure off Ashley in regard to his problem/putting
pressure on Ashley in regard to his problem.
Taking the pressure off and putting the pressure on is something
of a restatement of the above. Once again, there is a problem of balance and the
scales probably shift on a day-to-day basis, depending on Ashley’s well-being.
However, these terms allow you to revise matters on a day-to-day basis. For
example, ‘Ashley, today you suffered a fair bit, so we are going to take the
pressure off you’, ‘Ashley, you had a good day today, so we are going to put
some pressure on you, so we are going to expect you to clean up your toys’, etc.
3) Self-sensitivity/other-sensitivity.
Self-sensitivity and other-sensitivity: this is a critical issue
for young people and their families. Having a chronic and painful health problem
leads many young people to be exquisitely self-sensitive, as you might expect.
It can also lead their parents to be very sensitive to them. This can lead, in
turn, to a young person becoming very insensitive to others, particularly their
parents, and many parents, especially mothers, becoming very insensitive to
themselves. In the end, you have a young person who is
self-sensitive/other-insensitive and parents, particularly mothers, who are
child-sensitive and insensitive to themselves and their relationships. Once
again, this is a question of balance, a balance that is constantly shifting. If
you have kept this dilemma in mind, I can’t believe you would allow matters to
get out of balance much before you would make readjustments.
I wonder what you think about the above and if you think this
would be useful in providing a ‘map’ for deriving experiments, experiments that
won’t provide you with a once-and-for-all answer but rather day-by-day answers.
I believe, too, that the more you apply these dilemmas, the easier it will be to
rebalance, should you consider it necessary. I’ll stop here. Sorry for taking so
long in getting back to you. I look forward to hearing from you and meeting up
with you again. Feel free to send me any of your ‘stories’, which I hope in due
course will be compiled by your Association and circulated from one family to
another. These ‘stories’, when read together, will provide the reader with a
sufferer’s knowledge, a knowledge particular to the everyday life of a young
person with DEB and their family. I look forward to assisting you, in any way I
can, with this venture.
Best Wishes
David
The archives of the
Anti-anorexia/Anti-bulimia League
Having considered the history of this co-research work, allow me
to pass rather quickly to what I have been referring to for almost a decade as
the archives of the Anti-anorexia/Anti-bulimia League. The problem of so-called
anorexia/bulimia have consumed me up until recently. Anti-anorexia allows us, if
we listen carefully, to hear what Anorexia has to say and how it says it. But it
does not tell us its purposes or causes. That is for all of us to find out. How
does anorexia enter a young woman’s life, impersonate her for a period of time,
before becoming her cruel ventriloquist? What is so frightening is that the
words coming out of so many mouths in any number of mother-tongues are so much
the same. For reasons such as these, should we then concern ourselves as to what
is this ‘power’ that is pulling so many strings on so many lives? Furthermore,
how does such ’power’ spin so many deadly webs that entangle so many young
lives, bleeding them of hope so that nothing but their annihilation is
imaginable? How does anorexia conceal itself so that it can proceed without much
resistance to speak of, or hardly any public outcry? Anorexia’s ‘power’ is so
treacherous, so insidious in fact, that it has young women torture and violate
themselves while it remains in the shadows of their lives stalking them.
Anorexia not only claims its innocence but goes further than this. It now
promises these young women the means to escape the very web in which it has
ensnared them. They are told that the strict adherence to anorexia’s regimes of
rules and regulations will ‘set you free’. They are soon to learn that they can
never satisfy anorexia and are now on a ‘diet to death’. Each and very attempt
to reach the anorexic standard, and their inevitable failure to do so,
unwittingly tangles them more into the web. And the web now starts closing in on
them, slowly but surely squeezing the life out of them.
It has always been my practice to heavily document it from my
very early days as much for self-protection as anything else. Bob Dylan sang
something to the effect that: ‘If you are going to live outside the law, you had
better know what the law is!’ The philosopher Michel Foucault advised the
documentation, authentication and circulation of ‘alternative knowledges’ if
they were to do what he proposed was their work - that of critique. I have
always kept this in mind. Anti-anorexic documentation has taken many forms, and
the ‘itineraries’ of their circulation have become international, now being
carried by fax and email. Perhaps the five boxes currently stored in my garage
will soon move to some book, hypertext and/or electronic home.2 To be
sure, I’ll still keep my boxes of archives as back-up.
Why did I choose the term ‘archives’ and come to think of myself
as an archivist? First of all, an archive, according to the Concise Oxford
Dictionary, ‘is a place where public records are held’. In the early days,
the archive operated in a very crude way - I would Xerox copies of archival
material and post them on request. These archives have been both a resource to
and exemplary tales of a ‘counter-practice’ - commonly known as anti-anorexia/
anti-bulimia - to what I refer to as the social practice of anorexia/bulimia.
Many have called upon these archival documents to inspire their
own resistance. Often those who loaned the documents later wished to contribute
their own. The most common response to being read a document has always been,
‘Can I have a copy that?’ This growing body of documents - these fragments of an
‘alternative knowledge’ - needed a name. The Archives was an obvious
choice. Its main purpose was to merely store in good care and find ways to index
it so anything could be easily retrieved. Many of the first generation of League
membership bitterly complained that the various professional literatures
concerning anorexia/bulimia either dismayed them or made them actively ill. The
more autobiographical genre of the ‘I am an anorexic’ type seemed to offer
readers little chance for escape. More than anything else, it remains a
literature of despair.
I envision such an archive of resistance to be both a resource
and a platform for anti-anorexic developments that are as yet currently
unimaginable to me. I hope too that it will be the means to a movement that will
operate both underground and above ground to conscientiously object to, resist
and finally repudiate anorexia and bulimia.
I suppose by now 200 to 300 people from around the world have
contributed to it, although not every document forwarded to me has been
included. Most made their contribution for the express purpose of fostering
disobedience and protest to anorexia. Many of the contributors suffered dearly
for having done so by various forms of anorexic torment, but they did so
nonetheless. Still, we should remember that. It is more than a decade old now,
and sadly I have lost touch with some of its most notable contributors. But what
wedded us all together into a ‘community of concern’ was this archival knowledge
that provided a place to speak from and retreat to.
Such records of resistance tell too of the horrors and
inhumanity of anorexia/bulimia, and lift those up who have suffered and are
suffering so that we can witness their testimonies, keep their legacies alive
and, most importantly, pay them our respects.
Speaking anti-anorexia - an
anti-language
The documents within the archives can take many forms, as you
will see, but what is common to them all is their manner of speaking -
anti-anorexia - an anti-language, a radical form of an externalising
conversation.
The following quotation is one of the first public statements by
the so-called ‘anorexic’ Ellen West written prior to World War II. She was later
to suicide. Or was she executed? But first let us listen carefully to her words,
the only manner of speaking she had to express the horror of her life:
I don’t understand myself at all. It is terrible not to
understand yourself. I confront myself as a strange person. I am afraid of
myself; I am afraid of the feelings to which I am defencelessly delivered over
to every minute. This is the horrible part of my life; it is filled with
dread. Existence is only torture ... life has become a prison camp ... I long
to be violated ... and indeed I do violence to myself every hour of the day.
(Binswanger 1958)
If she could have spoken anti-anorexically, she might very well
have proclaimed her conscientious objection to anorexia rather than such a
confession of her supposed offences:
Anorexia, why are you trying to confound and confuse me so
that the contradictions I experience as growing up as a woman in the Third
Reich are obscured? Why did you appear just when I started to make myself up?
How did you turn my critique into my estrangement? Why would you want to turn
me against my very desires, wishes, opinions and appetites? And if I were to
reflect with a community of like-minded women upon such matters as how and why
you conscript us into prison camps where we are defenceless against your
tortures and violations, might we turn against you rather than our bodies,
minds and spirits?
In my experience, once provided with the means to speak against
anorexia/bulimia, almost to a person, everyone aged 12 years of age and over has
railed against many of the ‘psychological’ and ‘psychiatric’ constructions of
them as ‘anorexics’ or ‘bulimics’. The ‘stories’ from the insiders are
incomparable to the stories written about them by outsiders. Why is it that
insiders regularly refer to anorexia as either a grotesque manifestation of evil
or the devil, when such terms have otherwise been consigned to the dictionaries
of the histories of words?
Documenting
knowledge-in-the-making
What is most important to me about the archives is this: that
the documents record knowledge-in-the-making and reveal it as such. There is no
wish at all to use the conceit of ‘completed knowledges’ that promise to have
all the answers. By comparison, the archive would wish to provide some of the
best and most poignant questions and pertinent lines of inquiry. I am referring
to the distinctive ‘reading’ the archives call for as resonation. The
archives are read for inspiration rather than right answers, prescriptions, etc.
Here are some of my favourite questions to a person with whom I
have just shared an archival document:
-
Lee, did Judy’s account of her betrayal by anorexia ring any
bells for you?
-
Lee, did Judy’s account of her betrayal by anorexia enable you
to see anything about anorexia that it had been blinding you to up until then?
-
Lee, did Judy’s account excite your mind in any anti-anorexia
way? And if so, how?
-
Lee, were you able to connect in any way, shape or form with
Judy’s account?
Since most documents are knowledge-in-the-making, most people
resonate to this, although they may or may not concur with specific conclusions.
Robyn’s unmasking of anorexia
One video document that has proved to resonate with many
people’s experiences has been Robyn’s unmasking of anorexia.
David: Robyn, from what you have been telling me, does that
mean you have unmasked Anorexia?
Robyn: Yes I have. In fact, unmasking Anorexia is crucial.
It is the crux of the matter.
David: Can you tell me how you registered Anorexia unmasked
for the first time?
Robyn: I had a fight with my parents. Fights usually herald
several pro-anorexic days because, straight after a fight, I can’t eat. It’s
like a button being pushed. I was tremendously upset and decided to hide down by
the pool in the back yard. I then saw this ugliness that scared me witless but,
at the same time, I was able to face it. I really identified it as an evil
spirit. I felt its grip ... its bite. We were locked in combat for between a
quarter and half an hour. It started with panic and guilt over what I had eaten
over the day. Physically, I was feeling sick. I felt a gut dread ... an
unfocused dread. But then for the first time, I saw its true face. I had never
seen anything so hideous. It’s a monster, black, with indistinct features. It
was more an emotional concept. MY TORTURER. It did manifest itself as a force of
being, an evil power. I got the feeling I could oppose it. I struggled with it
in hand-to-hand combat. I prayed to strengthen my resolve. I won that fight but
it wasn’t a fight that was all mine.
Robyn then paused for several moments and, becoming far more
relaxed and even serene, she proceeded with a kind of summary:
I’ve seen it now. It will never come to this again. I’ve seen
its chilling side ... its cunning side. THE UNMASKING OF ANOREXIA is crucial. I
think I know what it is now. Now when it tries to trick me, more and more I see
them as tricks. It all began when I was 16, when I started blossoming as a
person and had just started flowering. Anorexia takes away your ability to
govern your own life and make your own decisions, and replaces this with a
crutch, a false refuge, somewhere to run away to. Anorexia separated me from my
hopes and dreams. It made me passive and out of the world. It disconnected my
logic and my heart. It was as if my life was happening to me and I had no say.
Carla’s story
Sometime after the making of this video with Robyn, I was to
meet Paula Parsonage, a counsellor working for Community Alcohol and Drugs
Service (CADS), through a decidedly strange set of circumstances. I was
contacted by Kathy Menzies, the Director of CADS, asking if I would provide six
sessions of counselling for Paula. This was the agency’s protocol for any
counsellor ‘losing’ a client. ‘Why me?’ I asked. I obviously misheard as I
thought Paula’s client had died of anorexia. I asked if I might contact Paula
myself, firstly to give her my condolences, as well as make a time to meet.
Kathy said that would be unwise as Carla hadn’t died yet; rather she had
recently been declared ‘terminal’ at a meeting Paula attended, along with
Carla’s family and all professionals associated with Carla’s care. Paula, quite
extraordinarily, refused to withdraw her services, although all other
professionals agreed to do so. I immediately asked Kathy if she would be willing
for me to use the ‘posthumous sessions pre-humously’. Kathy laughed, thought for
a moment, and agreed to this.
Paula, Carla and I met soon after. Carla was 38 and had had,
according to her, 55 hospital admissions over the past 23 years ever since
anorexia took over her life after she was sexually assaulted. She lamented how
she had always, for as long as she could remember, wanted to be a nun and live a
religious life. However, since this offence, anorexia had, in a manner of
speaking, excommunicated her, forbidding her to enter a church, pray in private
or even hang her cherished pictures of ‘Our Lady’ and ‘The Bleeding Heart’. I
surmised that over the course of so many hospital admissions, she would have had
her fill of being asked questions. She heartily agreed, but probably was left
wondering how we would fill our time. I proposed that we consult the archives
and that I would read from them. Included in my readings was Robyn’s unmasking
of anorexia.
The following letter details our next meeting.
14.5.93
Dear Carla and Paula,
Carla, Paula and I certainly felt a long way behind you in terms
of your anti-anorexia. And I was touched to learn that all the laughs we shared
in our first meeting was the first time you had heard the sound of your own
laughter in over 20 years. I wish I had been aware of that at the time so I
could have relished each and every one of your laughs and jokes. Anorexia does
require people to be deadly serious and, to be quite frank, I think it’s deadly
boring.
After our first meeting, you told us of the onset of some
‘uncanny experiences, religious in nature’, which provided you with an
anti-anorexic vision. When we got thinking about it, your vision came to you
something like the visions Robyn documented in the League archives.
Carla, why do anti-anorexic visions take such unusual avenues to
bring new thoughts, ideas, etc. to your conscious mind?
Carla, do you think these visions were an expression of
anti-anorexia bursting through the defences of anorexia and the spell it had
cast over your life for the past twenty-three years of ‘hellishness’?
What you told me about your vision was this: ‘I’ve lived this
long. There must be a purpose in it. I am a FIGHTER and have survived so many
physical ailments’. And you suspected that it was your personal faith and
spirituality that was at the bottom of this. You wondered if it might be Our
Lady, and then told us how anorexia had ‘forced me to neglect her’. In your
visionary experiences, you were able to see a future for yourself, even though
it is as yet unclear.
Did anorexia tell you that you were unworthy of your faith?
Did anorexia try to strip you of your very soul?
Was a hint of the future refreshing to your soul? Did it hearten
you in any way?
Through this visionary experience, you thought you now had
embarked upon an anti-anorexic direction. To do so, you must have broken the
spell of anorexia. Can you record for the archives your ‘first steps’, because
the ‘first steps’ are always the biggest steps, even though they seem minuscule
at the time?
On reflection, you thought the fact that ‘I didn’t believe in
myself’ may have advantaged anorexia in deceiving you into believing in its
promises of salvation. And you wondered, too, if ‘I hadn’t been searching in the
wrong direction. I was hoping for something to drop out of the sky’. When did
you realise that anti-anorexia could only be gained by resistance and struggle?
How did that dawn on you? In fact, you said of late, ‘I am getting more positive
and starting to believe in myself’. And this is in the face of anorexia’s
attempt to isolate you and drive you to self-execution, one way or another. For
example, anorexia has got you out of practising the art of conversation and
tried to convince you that you were nothing but an ‘anorexic’ and that there was
nothing left of you as a person.
In your visionary experience, you turned against perfection too.
It provided you with a rallying cry: ‘NOBODY IS PERFECT!’
And it made you fully aware of the trap anorexia had ambushed
you into: ‘The more you try to be perfect, the more inferior you feel. The more
people blame you for anorexia, the more you feel like a second-class citizen.
And then you start to feel that anorexia and its torture, punishments and
enslavement is what you deserve because you are no longer normal.’
Both Paula and I witnessed a lot of your self-confidence shining
forth. This is what you had to say: ‘I am working on getting some sort of
control over my life’. This didn’t satisfy my curiosity and I asked more
questions of you. You replied: ‘My faith is mine again. All this is happening
for some reason. There is some power behind all this.’ Well, I was convinced of
your power, although that is not to take away from the power of anorexia. As you
told us, you had previously thought that if you just went along with anorexia’s
demands and requirements of you, you would finally satisfy it and it would leave
you alone. You then found out to your dismay that it would not rest until it had
you sign your own death certificate.
It was now you cried out those slogans to rally your spirits:
NOBODY IS PERFECT!
I’VE GIVEN UP TRYING TO PLEASE MEMBERS OF MY FAMILY
I’LL PLEASE MYSELF INSTEAD!
I’LL GO MY OWN WAY!
You went on to tell us that ‘I used to feel guilty if I ever did
anything for myself to make myself feel good’, but that now ‘I feel that I have
come out of a dark hole ... out of a nightmare’.
Anorexia is a formidable enemy, but anti-anorexia is just, is it
not? And I believe justice should now be on your side. And in addition, is there
some divine presence behind what you refer to as those ‘uncanny things’? What do
you think of the fact that you can now ‘pray well’ again after all these years?
And that you stumbled over the Old Testament verse of ‘a time for everything - a
time for war and a time for peace’?
Carla, I submit this question to you with the utmost sincerity.
Is it your time for an anti-anorexic crusade? Has peace and submission to
anorexia brought you anything but your near-annihilation? Is your anti-anorexia
your holy cause? When I asked if anorexia had ever taken your soul, you
fervently denied this and reassured me that that had never been contaminated by
anorexia.
Yours anti-anorexically
David
What the League has meant to me
I would also like to tell you what the League has meant to me.
For me, this work has been extraordinarily difficult on so many fronts. How many
limbs have these families and I gone out on, that if one broke, death would have
been very likely. I cannot tell you how often in the solitariness of my office,
I too would appeal to the League, embodied in its archives. I have lived for
several years now with the comfort that Lee, Sarah, Brett, Bryce, Paula, Fran,
Eva, Gloria, Jenny, Jo-anne and so many more are both behind me and beside me.
Anti-anorexia has become my place too to stand and speak from, for at times you
can feel invisible - even though you’re not - but this is certainly worth
entertaining when you work against evil.
The Leagues as ‘friends-in-arms’
To end, let me tell one final story. Mary, aged 17, had pulled
herself out of the quicksand of anorexia in 1997 and 1998 for the time being. It
was painstaking for her parents, Warren and Sharon, and myself. However, when
she was faced with her final secondary school examinations late last year, we
all feared that every freedom she had reclaimed had been forfeited and she would
perish. Warren, usually a strong contributor to any anti-anorexic matter at all,
sat with his head bowed, tears running down his cheeks and pooling onto his
shirt collar. Sharon, also a strong and thoughtful commentator, seemed frozen
into stillness and glacial silence. It seemed as if Mary had come to say
farewell. I found this unbearable and wrote to her from the very ‘heart’ of the
archives.
Dear Mary,
I wanted to write you after our meeting on Thursday. I strongly
felt Anorexia, once again, pulling you away from us and down, insinuating that
there was no other ‘world’ for you other than his Hell, where you might sit
beside him as his Queen. It was unnerving for me, and, judging by Warren’s
helpless tears of frustration, it is for us all. Before I had time to put my
fingers to my typewriter, your mother rang to reassure me that you were able to
come back to us a bit. That was a great relief to me, and I know it was to
Sharon and Warren. However, it did delay my response.
Mary, I am writing to you in defiance of Anorexia and all that
it stands for. I swear to you - and all those murdered by Anorexia are my
witnesses - that nothing will prevent the League from keeping a ‘place’ open for
you - a place to stand and take a stand for your life and entitlements to
happiness, peace and fulfilment. Admittedly, such a Resistance must at times go
into hiding underground and at other times strike fiercely. And we do sustain
losses. But such losses are trivial compared to those suffered at Anorexia’s
hands. After all, it will even ‘eat your smile for dessert’. What kind of life
is it that Anorexia promises? To be a well-dressed Barbie-puppet, looking
pretty? What do you make of her smiling as she goes about measuring herself up
to perfection and torture?
What does Anti-Anorexia promise? Nothing but a place to stand
and hold up a mirror for you to see Anorexia without its mask of benevolent
solicitude. It is a longstanding tradition in the annals of punishment and
torture that the executioner always keeps his face well hidden, is it not? From
an anti-anorexic standpoint, Anorexia can no longer blindfold you or keep you in
the dark. Now can you see what there is to see? Can you speak out against
Anorexia because you have the language to do so? Can Anorexia conceal its
intentions for you any longer? Are its promises turning to dusty betrayals?
If my experience in the League over the past 10 years is
anything to go by, there will be struggle, but I suspect in and out of those
very struggles, you will forge yourself for yourself. I can assure you there
will be fun and celebration along the way. And one day you will decide for
yourself to put your arms down. However, will you ever set your vigilance aside?
After all, Anorexia is nowhere and everywhere: Anti-anorexia is merely
somewhere.
Mary, we remain your sisters, your brothers, your comrades, and
your friends-in-arms. We remain where we are, even if sometimes we must go
underground, but we will never surrender. If I am any judge of Sharon and
Warren, I believe that they would never surrender either. Never!!! To be one of
us, there is no measurement, no examination and no assessment. Your suffering,
which is so evident to all of us, is your welcome.
Welcome back even if you have to jump the hurdle of your
‘examination’. We want you to know we abhor examinations. You are more than
enough for Anti-anorexia!
I look forward to catching up with you next week.
David, on behalf of The Anti-Anorexia/Anti-Bulimia Leagues
Notes
David can be contacted c/- The Family Therapy Centre, 1 Garnet
Rd, Westmere, Auckland, New Zealand.
By the 1990s, the requests for archival material had became
too onerous and the means of its distribution too unwieldy and expensive. The
archives themselves were growing at such a rate that they were starting to
defy my means to even store them. From 1992 on, many League members had been
urging me to compile the archives and make them available by way of a book. As
such, this would have required the format of an encyclopaedia and I doubt if
any publisher would have considered that a viable proposal. I could not
imagine my way out of this, until I hit upon the idea of a conventional book
(well, not really that conventional) that could be read for itself at the same
time as serving as an orientation for a more complete archive, lodged on a
website. Hypertext space is far more generous and less costly than textual
(book) space. Otherwise, I should have been required to reduce, say, 5,000
pages down to 200 pages and, no matter how hard I tried, it was an utter
impossibility. The integrity of the archives had to be maintained at all costs
rather than an ‘anti-anorexic’ book of greatest hits. A manuscript is
currently being prepared by Rick Maisel (Berkeley), myself and Alisa Borden
(Los Angeles) for W.W. Norton, and is tentatively titled
‘Anti-anorexia/anti-bulimia: Archives of Resistance’.
References
Binswanger, L. 1958: ‘The case of Ellen West.’ In May, R.,
Angel, D. & Ellenberger, H.F. (eds), Existence. New York: Basic Books.
Wynne, L.C., Shields, C.G. & Sirkin, M. 1992: ‘Illness, family
theory and family therapy: Conceptual issues.’ Family Process, 31(1).
Copyright © 1999 by Dulwich Centre Publications
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