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Articulating Bodies: The Case of Muscular Dystrophies*

Michel Callon and Vololona Rabeharisoa

Centre for the Sociology of Innovation


Ecole des Mines de Paris
email: callon@csi.ensmp.fr
rabehari@csi.ensmp.fr

*
This paper has benefited from the generosity of insightful and stimulating comments of
numerous colleagues. We particularly thank Bernike Pasveer, Madeleine Akrich, Marc Berg
and the participants in the seminars they organized in Maastricht and Paris in 1998. Stefan
Hirschauer , Joost van Loon, John Law and Annemarie Mol provided us with very stimulating
suggestions. Finally we are very grateful to AFM support which made this work possible

1
Introduction

"Dare to have a tracheotomy" is the title of a film produced by the AFM1. The
aim of the film, based on accounts by patients and their families and friends, is to show
that it is possible to live with a tracheotomy. Thus, the idea behind its conception is an
educative one: to provide information on the pros and cons of a tracheotomy rather than
imposing it as the only alternative.
The film establishes striking contrasts between the conditions in which patients
and their families choose to live. Pierre-Yves, for example, is a young 16-year-old
suffering from Duchenne de Boulogne's disease. A few months ago he opted for a
tracheotomy, an operation which facilitates patients' respiration but restricts their lives
in many ways. We follow Pierre-Yves through an ordinary day, from his home where
his mother helps him with his ablutions and breakfast, to school where, surrounded by
his schoolmates, he participates actively in collective life. The sequence ends with the
positive words of his father: "It [the tracheotomy] makes life much easier for all of us...
It is much better for him". The audience is almost convinced.
A second testimony follows, by a family which has organized its life around the
illness of the eldest son, now 45-years old. His mother comments: "Jean-Pierre had a
tracheotomy more than 20 years ago, when he had respiratory problems". A few images
show the difficulties of daily life. The parents are aged and alone, faced with an adult
who is totally incapable of moving. With his head supported by two pillows, he talks by
means of voice synthesis. He is no longer able to use his computer on his own. It is
difficult to imagine how he can still enjoy life, despite the reassurance of his sister - "He
can do many things, he can have interesting experiences, meet people and engage in
cultural activities" - and despite his own statements which hardly seem convincing: "I
enjoy life".
How can one not be puzzled by these two sequences showing two
tracheotomized patients, suffering from the same disease, both strongly and warmly
supported by their family circle ? In both cases the same optimism is evident. The father
of one of them affirms that life is much easier for everyone, thereby suggesting that it is
worth living. The second patient, surrounded by complicated buzzing machines and

1
AFM is the French association of patients suffering from muscular diseases.

2
parents showing their agreement, smilingly admits that he enjoys life. Yet how can we
not exclude what seems, in the case of Jean-Pierre and despite the denials of the actors
themselves, to be the prolongation of life by medical means? How, after seeing the
second sequence, can we not imagine that Jean-Pierre is the image of what Pierre-Yves
will inevitably become ? And how can we not see in the reassuring words of his father a
hint of self-deception ?
The sociologist's role is certainly not to call into question the patients' and their
parents' joie de vivre. On the contrary, our task is to explain it satisfactorily. We have to
find elements of analysis which help us to understand simple words such as:
"Tracheotomy is much better for him" or "I enjoy life", pronounced by someone (or by
his/her spokesperson) who seems to be either condemned or at least deprived of some of
the attributes that are supposed to define a human being. This issue is so difficult that
we can do little more than look for clues2. In this chapter we consider that it may be
useful to explore one particular avenue, i.e. the different trials suffered by the patients,
their friends and all those who are associated with them at one time or another, as well
as the resulting commitments made by those concerned.
In the first part we show that if it is evidently not possible to isolate the patients,
it is even less possible to separate the bodies, agencies and subjectivities. It is this
intertwining, this hybrid collective which must be taken as the object of analysis.
Having recalled the now well known limits of Actor-Network Theory we then present
three types of trial and their implications. By placing the concept of a trial at the centre
of the analysis, we formulate a dual hypothesis. First, the collectives consisting of
bodies, agencies, rules of cooperation, machines, competencies and heated debates,
cannot be considered as "realities" standing alone with their intrinsic characteristics,
their own coherence and their internal rules of functioning and evolution. They are
brought into existence through the various trials which enact and perform them. But,
and this is the second point, all the elements constituting the collective should not be
considered as separate dimensions and entities. For example, bodies both as "realities"
and as analytical categories cannot be disentangled from agencies and their distribution,
and from modes of articulation between individuals and the collective (Goffman, 1983;
Hirshauer, 1991; Mol, forthcoming; Akrich and Pasveer, 1996; Akrich, 1996; Moser
and Law, 1999; Kelly, 1992). Focusing our attention on trials will allow us to access

2
For an interesting presentation of the sociological and philosopical literature on the body see
(Williams and Bendelow, 1998).

3
bodies that are as complex as the configurations they help to construe and which,
conversely, help to shape them.
To present the three forms of trial, we use the example of Infantile Spinal
Muscular Atrophy (SMA)3. Thus, focusing our analysis on a particular form of MD, we
exclude possible elements of comparison between diseases. Our aim is more limited: to
characterize the trials and analyse the engagement of the body in them. An initial trial
concerns the constitution of the collective itself (its boundaries, the identity of its
elements and the nature of the relations established between these elements). The
second trial concerns the concessions that the collective and its members are prepared to
make, and through which the agency is shaped and distributed. The third concerns the
setting up of articulations between subjectivities and a world they experience. The body
intervenes three times, in three different but inter-dependent ways, in these three
categories of trial. Each time, it is at the heart of the questions asked and the answers
formulated. Its evolving and complex reality stems from this triple contribution.

1. SMA as hybrid collectives

In his analysis of the trajectory of disease and the multiple negotiations it


generates, A. Strauss clearly shows the progressive construction of collectives as well
as the variable character of their extension and constitution (Baszanger 1992; Corbin
and Strauss 1988; Bowker and Star 1999; Strauss and Corbin 1991; Timmermans
1998). The dynamic reconfiguration of these collectives is closely linked to that of the
disease and of the identities of the actors involved. In this analysis, a key role is given
to negotiations and debates between actors faced with uncertainty, since patients play a
strategic part in the formulation of problems and the choice of solutions. In the case of
diseases where a clear definition and treatment depend on research underway and have
not yet been established, these debates and negotiations are in the foreground. It is also
to Strauss and his interactionist colleagues that we owe the emphasis on concepts such
as articulation or alignment. These concepts refer to the work required for the

3
Spinal Muscular Atrophy is a disease of the anterior horn cells. Anterior horn cells are located
in the spinal cord and are the main motor nerves that control muscles. Some forms of SMA (I et
II) are lethal.

4
composition of collectives and the coordination of the different entities involved.
Configuring the collective, defining its boundaries and composition, and articulating the
entities comprising it, are all preoccupations constantly revived by unexpected events
and problems which, for the actors, are trials forcing them collectively to devise new
arrangements.
The film and the interviews on which our analysis is based show how dramatic
these negotiations and arrangements might be. Indeed, the obvious gravity of the
disease does not fully explain this dramatization. The role of the AFM, an association of
patients and the families of patients with neuromuscular diseases, is essential. For many
years, through its support for scientific and clinical research, but also through its actions
of a medico-social nature, the AFM has been helping to structure the space of possible
choices open to patients and their families, to make it visible and to organize the
debates4. Based on the medical world it has, in particular, progressively defined the
different operations that can be performed on patients' bodies. That is why the film puts
the tracheotomy at the centre of a sort of mini-public arena in which patients, their
families and the medical profession all passionately discuss the decision to be taken
together.
The implications of this debate are crucial. As clearly shown in the case of
tracheotomy it concerns the form of the collective, as well as the nature of the
commitments that this collective is prepared to make. This collective is indeed an
hybrid collective mixing humans and non humans. Take the case of a young patient
who has just undergone a tracheotomy. After a week in hospital "he goes home". The
statement: "he goes home" is, however, misleading, for the action of "going home" is
collective and distributed (Hutchins 1995; Berg 1997). In order to be successful there
has to be a minibus suitably equipped so that the patient in his electric wheelchair can
be transported without being disconnected from the breathing machine. There also has
to be a ramp to wheel him out of the bus. He is, moreover, accompanied by several
people who not only carry out the operations involved in the transfer but also administer
the initial medical care at home and take care of the family's anxiety. As one doctor
explained:

4
On the role of association of patients see: (Barral and al. 1991), (Dodier 1999), (Barbot, 1998) (
Barbot, 1999) (Epstein 1995), (Epstein 1996), (Fullwiley 1998),
(Rabeharisoa and Callon forthcoming (a)).

5
A successful return home requires planning and coordination between:
- the family which has received specific instructions,
- the family doctor who is willing to learn the proper follow-up of a
tracheotomized person,
- the home care services which are often a great help to the families,
- and the hospital that prescribed the tracheo, which will take care of long term
follow-up.
The apparatus is provided by the specialized association which must also
explain its use to all the family members. (excerpt from the film "Dare to have a
tracheotomy")

The patient and the collective in which she or he takes part (we shall use the
term collective-patient as a form of abbreviation),5 constitute a reality that is well
defined by the anthropology of science and technology and, more particularly, by ANT.
It is a reality for which the term "hybrid collective" has been used (Callon and Law
1995). The fact that the action is distributed, that it involves a hybrid collective, is in no
way exceptional. Action is always distributed, delegated to humans and non-humans
alike (1991; Gray 1995). What differs from one configuration to the next is obviously
the number of delegations and the heterogeneity and diversity of the elements
mobilized; in short, the degree of alienation or the number of aliens that are required to
meet the objective "going home and surviving". The greater the alienation, i.e. the
greater the number of human and non-human actors and the more diversified they are,
the more crucial the learning that allows for mutual adjustments and a satisfactory
coordination of the different elements of the collective (Winance 1999).
For example, in the days following a patient's return home, nursing auxiliaries
visit her home to adjust the ventilation and the oxygen flow, and to change the canula:

We also supply the small equipment for canula maintenance: small brushes,
aspiration tubes, oxygen tubes, etc. We teach the family to take care of the
tracheo. We first teach them an aspiration technique which is quite simple. Then
we teach them to change the canula, to clean and sterilize it, the simple things
that require no special competence, but nonetheless need to be learned (excerpt
from the film "Dare to have a tracheotomy").

5
If we chose the term "collective-patient" which reduces a sick person to the state of a patient, it
is because we are interested in medicalized configurations. We observed trials in which the
label "patient" was questioned, but that is not the case in this article. For an analysis of these
other types of trials see (Callon and Rabeharisoa 1999).

6
The patient's home becomes an extension of the hospital. Her room is cluttered
with machines, dials that have to be watched and oxygen cylinders. Constant care is
required. Handling the patient (e.g. transfer from the wheelchair to the bed, washing)
requires the intervention of several people. Physiotherapists stop by regularly, as do
care officers. Yet, while the various collectives in which the patient can live can be seen
as extensions of the hospital, they cannot be reduced to its mere replication. A child
suffering from severe muscular dystrophy (MD) goes to school, eats at the canteen and
meets other children with whom she plays and works and who take care of her. She also
travels, with the sole constraint of having to recharge her batteries - that is, the batteries
of the breathing machine - every two hours. She can go to a restaurant, provided the
owners and other customers accept her presence which may be considered burdensome
(a person with a burden is burdensome). The patient moves about in a network adapted
to her survival, which provides all the articulations and connections required. Every
place (the school, restaurant, room, van) has been configured to accommodate her. If
not, she simply cannot survive or travel any longer.
So far, the description is classic ANT in style. It already has the advantage of
overcoming usual divisions between the patient and his surroundings, and between the
disease as a lived, individual experience, and as a physiological or social reality. Thus,
it prompts interest in the collectives which are part of and compose each of these
dimensions6. But it would be a mistake to be satisfied with it.
Although in its most recent developments ANT has stressed the importance of
the concept of collectives, it tends, as its name indicates, to favour the network as a
form of organization of relations. This focus has two serious drawbacks:
(i) First, the concept of a network tends to reduce the question of boundaries to
simple quantitative considerations: internal links are more intense and dense than
external links. This approach is not satisfactory. The position of boundaries, of a divide
between us and them, is closely correlated to the construction of a collective identity,
the definition of which is a subject of controversy - as debates involving patients and
those around them show throughout the film. How can we not qualify as politics these
discussions and the commitments or decisions to which they lead? We are not of course
referring to politicking which feed on opportunism or Machiavellism, the politics which
have no aim other than building alliances and imposing trials of strength. What we have

6
This approach makes less relevant discussions on commonplace distinctions like those
between disease, sickness and illness. On these classical distinctions see (Turner 1992).

7
here is politics which aim at defining the conditions of communal life and reflexively
constructing the social link. This type of politics, as we have known since Ancient
Greece, involves public debate and the exchange of arguments. It is articulated (Arendt,
1988). That is why we propose the concept of political articulations to denote the trials
during which the constitution of the collectives that we have conveniently called
collective-patients (to highlight the fact that they centre around the management of
disease) is debated and configured.
(ii) Secondly, the concept of a network is too general and formal to account for
the plurality of settings and the diversity of forms of relations and actions characterizing
them. What happens in hospital is different to what happens in a restaurant and that, in
turn, is different to what happens in a bedroom, canteen or classroom. Moreover, what
happens in one of these settings is in no way comparable to what "happens" in the
others. That is what many patients or their friends and families express when they stress
that their lives consist of unexpected events, friendships, cultural activities, etc. As one
can see, these hybrid collectives, contrary to what ANT maintained for a long time, are
not simply described by the modalities of distribution and delegation of action. ANT
needs to be enhanced and may be transformed so as to cope with this variety, specificity
and richness of settings (Singleton and Michael 1993; Mol and Law 1993; Star 1991).
In particular, what the film on tracheotomy teaches us is that to account for the variety
of collectives that can be conceived and to describe their genesis, there is no alternative
but to grant bodies their full significance, that which the actors grant them in the
debates they organize. In the constitution of these constantly evolving collectives, the
bodies of the patients and those of the people around them cannot be overlooked
(Mulcahy 1999).
Giving all its richness back to the collective-patient, being attentive to the trials
that help to perform not only its boundaries but also the elements comprising it and
relations between these elements, is the first requirement. Bodies are at the centre of
these political articulations and the trials attending them. In a sense they provide to
these trials their substance, their flesh, as Merleau Ponty would say (Merleau-Ponty
1964). It prompts us to conceive body politics as a politics of bodies.7

7
It is probably Arendt who, in her loyalty to the Greek political tradition, has gone furthest in
the "disembodiment" of body politics. For her, political debate can exist only if a strict
boundary has been drawn between the public sphere in which citizens detached from all
contingency act, and the private sphere which ensures the satisfaction of all human needs.

8
2. Bodies as political articulations

Political articulations refer to three types of debate: the first concerns the
boundaries of the collective, the second its composition and the third the types of
relations between the entities comprising it. The following section is a presentation of
each of these debates. As we shall see, the engagement of bodies in them fully justifies
their consideration as political articulations.

(i) Drawing boundaries: bodies as exclusion/inclusion operators


The first debate is on the extent of the collective and, more precisely, on its
boundaries. A line has to be drawn between foreigners-enemies and those people with
whom and thanks to whom we live. And in the construction of this divide the body
plays an active role.
Nowhere is the definition of the extension of the collective more a question of
life or death than in the case of SMA. Outside the network shaped to ensure that the
patient is able to maintain his articulations and connections, survival is threatened.
Going into an unequipped house, moving too far away from physiotherapists and care
officers, and from tarred roads on which the patient's turbo can ride, or losing sight of
those people who can take care of his canula, all represent a danger of death. If he dares
to attend a party without his escort of devoted friends to offer explanations and to
reassure and take care of him, the gap around him inevitably widens. Without his school
and specially equipped canteen he is excluded from the school system. Thus, the patient
surrounded by his collective constantly tests the boundaries he cannot cross and which
sometimes cruelly remind him of their presence, as when a battery fails or a restaurant
owner turns him away, fearing his mere presence may disturb the other customers.
Negotiating the limits of the collective, deciding on what belongs to it and what is
outside it, is a constant trial feeding a permanent debate within the collective. Should
the restaurant owner be forced to accept the wheelchair and breathing machine? Should
the child's right to attend school be demanded, despite the unfavourable reactions of the
teacher and principal? Should the professor be forced to agree to a consultation at
Garches so that the patient can be accepted for therapeutic treatment8?

8
Garches is an hospital located near Paris specialized in the treatment of disabled persons.

9
In the construction of these boundaries, in this never-ending negotiation of the
limits of the collective, this ceaseless task of distribution needed to distinguish those
who belong to the collective and those who are rejected from it, the patient's body is
constantly an issue. It is around this body, its constitution and its capacities, enhanced
or not by machines or care givers, that the territories of the collective-patient are
defined. In this constantly renegotiated delimitation of the collective, there is only one
issue: the body, its competencies and the prostheses or connections needed to guarantee
the patient and those close to her a life they consider satisfactory and worth living. The
body and the definition of its performances and rights are at the heart of each of these
trials which, in turn, contribute to its own definition. A school equipped to receive a
young SMA patient, to enable her to live and interact with her schoolmates, teachers
and other staff, to eat in the canteen, to move around without it being an ordeal each
time, a school which is integrated into the collective-patient, which structures it rather
than threatening, limiting or confining it, in short, a school which is designed and
organized according to the abilities of the young SMA patient, cannot be described
without taking into account this body and its capacities. The child's body acts as an
operator articulating the collective, as a central piece holding together the different
human and non-human elements comprising the collective.9

(ii) Collective shaped by bodies


Drawing the boundary between the collective and the outside world, against
which it is often necessary to fight, is not the only political issue and source of
discussion between members of the collective. Nor is the mere appearance and shaping
of the body in the political debate and the articulations it spawns. In fact debates on the
collective also concern its composition: of whom and of what is it composed? In the
answers to these questions, bodies, their configuration, their place and their properties,
also play a central part.

9
The analysis, concerning the boundary lines, should be refined. It is not enough for a school to
be equipped for it to be included ipso facto in the collective-patient. It would be more accurate
to say that if it is not equipped, there is a strong chance of it being excluded. The definition of
boundaries is always a matter of local negotiation. The only important point here is that these
negotiations are directly articulated to the patient's bodies. For the role of bodies in those
inclusion/exclusion processes, see (Butler 1993).

10
Consider the case of a tracheotomy. The decision to have one or not is preceded
by long and complex debates (on the relevance of this notion of decision-making and on
the pervasiveness of the debates surrounding such decisions see below, section 3).
Through the way in which they take place and the identity of those who participate in
them, they mark the first boundary between the collective (including those who talk and
on behalf of whom they talk) and the others, often seen as a threat. But through the
content of the debates it is also the composition of the collective and the nature of the
ties that will be established and developed in it, which are at stake.
Laurent, a 22-year-old Duchenne de Boulogne patient, sits smiling next to his
father who remains silent:

I always said that I didn't want to be dependent on a machine, that I'd rather not
go on living if I had to live with a machine. It's a bit hard for my mother when she
hears that (excerpt from the film "Dare to have a tracheotomy").

In a few sentences Laurent describes the collective he wants and the one he
rejects; the one in which he is prepared to live and the one which would be unbearable
for him. The main issue, for him and those around him, is whether he can accept the
reconfiguration of his body imposed by the tracheotomy and, with it, the breathing
machine with all the attendant constraints and care givers, or whether he prefers
maintaining the collective in the form and state in which it is. What needs to be noted,
apart from the choice itself and its motivations, is that each of these two possibilities
implies different bodies: in one case a mutilated body, attached to a technical device
without which it cannot function; in the other a body which is less dependent but is
overwhelmed by pain and difficult breathing, and which is constantly threatened by
death. Each of these possibilities also implies collectives composed of different entities:
in one case the constant presence of a technical device to which a group of humans and
instruments is attached; in the other a weak reconfiguration which nevertheless implies
a mother in pain and, among other things, emergency visits to hospital. This political
trade-off between different forms of the collective-patient was present in all the cases of
SMA that we studied. For example, after serious reflection and discussion with those
around him, M., an 8-year-old SMA patient faced with the dilemma of having a
tracheotomy or not, preferred a collective without the breathing machine. This choice
would enable him to continue interacting with his little friend who was scared of the
synthesized voice of his twin brother who had recently opted for a tracheotomy.

11
What is important, at this stage of the analysis, is to emphasize that the
constitution of the collective hinges on the patient body configuration. The body is an
essential part, for a particular collective implies a particular body, and a particular body
implies a particular collective. Depending on whether or not he has had a tracheotomy,
M.'s little friend may or may not stay near him. The same applies to Laurent who,
depending on the decision taken, will become part of a radically different collective.
That is why it is not inappropriate to distinguish between tracheotomized collectives (or
body politics) and non-tracheotomized collectives. Their composition is articulated
around and through the operation.

(iii) Bodies as (less or more strong) mutual entanglement


MD is a living laboratory in which a wide variety of collectives are tested and
configured. In particular, the nature and range of relations discussed and performed
exceed what we are accustomed to and enable us to conceive of new political spaces,
for the individual is no longer the ultimate atom from which the collective is built. Here
again, collectives formed around patients with spinal muscular atrophy, who have had a
tracheotomy and an arthrodesis, provide us with many different cases.
Let us take the case of the G. family. This family was struck severely by illness.
After the birth of two healthy children and the loss of a third child who died from
Sudden Infant Death Syndrome, and after discussing the matter at length with their first
two children, the parents decided to have another child. Two identical twin boys (M.
and R.) were born, but only a few months later they were diagnosed as having SMA II,
one of the most serious forms of MD which had hitherto always proved fatal. The years
passed, and as the end approached the question of death progressively became a subject
of discussion for all the members of the family. Eventually, after lengthy discussions on
the subject, M. and R. decided to be incinerated and to have their ashes mixed into the
soil in the garden: "Then we will always be with you". After the death of the two twins
the parents and surviving children remained in the same house, in the middle of
nowhere. They changed none of the special equipment set up for the twins and, in
response to our question, confirmed that for them there was no question of them
leaving: "R. and M. are here with us". The hybrid collective, from before the twins'
death, is still there: the electric eyes for the automatic opening of doors and switching
on of lights, the specially equipped bathroom, the vegetarian diet, the computer screen
with messages from other children living hundreds of kilometres away, duty at AFM,

12
phone calls to other parents, etc. R. and M. are "just as" present after their death as
before. They are excorporated minds whose alienated bodies were mixed with things in
the house and are now, and forever, mixed with the soil in the garden. Such a way of
defining the links between the entities involved in the debate on the composition of the
collective, has this extraordinary property of abolishing the divide between the dead
and the living or, more precisely, of mobilizing in the debate on both embodied and
bodiless entities. Why separate all those entangled entities, human and non human, take
drastic measures, define person-individuals? It would be as cruel and futile as
separating Siamese twins who are used to feeling the other's body, to living with the
other's body as with their own. Who composes whose life?
The aged mother who talks of Jean-Pierre's studies, gives another illustration of
these unusual arrangements: "I spent 12 years learning with him …". Who learns? Not
Jean-Pierre, nor his mother. It is a composite individual consisting of Jean-Pierre, his
tracheotomy, his breathing machine, his canula, his computer (which enables him to
read and write) and his voice synthesizer, as well as his mother and sister who are
"sitting for" their exams again. And the acknowledgement: "As for my parents, I realize
of course that I'm responsible for changing the course of their lives" is echoed by:
"That's what we fear: what will happen after us?".
How can one describe this solidarity in which there is no question of altruism,
generosity or devotion, all of which imply well-defined individuals? In these strange
and unusual collectives, entities are both distinct and mutually entangled. The regime
established in this extreme case where bodies and emotions are merged and entangled
("if I don't have a tracheotomy my mother will suffer"), and humans and non-humans
woven into the same web, is that of presence. "We are here but what will become of
him when we're no longer around?" Or, "We've tried to give them what we had". This is
the regime of a gift without any counter-gift, of the presence which defines each person
as irreducible and at the same time entangles him with the collective.
It is against this extreme regime that Laurent takes a stand (see above). He
refuses a tracheotomy and argues for another configuration of the hybrid collective, for
other links and other forms of relationship in which the lives of those concerned are less
entangled, and agencies and emotions are disposed differently.
The advantage of MD is that it provides us with a wide range of possible
configurations. The interesting aspect of these collectives, with their rare (at least in our
Western democracies) configurations, is that they harshly confront both the social

13
sciences and the actors with the question of the social link. We have just seen that
SMA, for example, can be associated with collectives in which what we have called
presence is the dominant regime, and collectives where the entanglement is looser and
individual agency is given priority. The important point that needs to be emphasized
here is that, in the shaping of these multifarious collectives and the determination of ties
between the entities composing them, the intervention of bodies is omnipresent.
Prosthesized bodies haunt the G's house; they are in all the equipment which, by
spreading out the twins' bodies, enabled them to be articulated to the collective. It is
because this equipment is an integral part of these bodies that it permanently guarantees
their presence. Similarly, it is Jean-Pierre's re-articulated body which makes this non-
distinction of people possible. Finally, it is by refusing surgery that Laurent opts for a
certain form of relationship ("its a bit hard for my mother"). Bodies as producing social
links are as diversified as the collectives they contribute to shape.

*
* *

To qualify these roles of bodies in the constitution of the hybrid collective, we


suggest talking of bodies as political articulations. The points developed above justify
the term, for they show that bodies can be considered as political articulations from
three points of view.
a) First, bodies are at the centre of the debate that focuses on the constitution of
the collective and that can be qualified as politics. Politics as such appears through this
construction of a (micro) public space where arguments and counter-arguments are
exchanged and evaluated. In the scene mentioned above, Laurent is engaged in a harsh
debate with his silent (but nevertheless present) father and his absent (but nevertheless
deeply involved) mother. M. reaches what seems to be his own decision, refusing a
tracheotomy, after long discussions with his twin brother (also an SMA patient, who has
opted for a tracheotomy), his mother, father, brothers and sisters, as well as other
patients with whom he has contact through the AFM. What strikes the observer is the
existence of these mini public arenas in which questions concerning the composition of
collectives formed around patients and, in particular, the place occupied by bodies, are
debated. Since people take position and make pro-positions in these discussions, it is
legitimate to talk of articulations (in the sense of propositions being said to be

14
articulated) and, given their implications, to qualify them as politics (Callon and
Rabeharisoa 1999).
It is moreover relevant to note that the patient's body is not the only one at stake
in these debates. These political articulations also bring into play the bodies of the
different actors comprising the collective. Winance, in her work on the choice of
prostheses by the families of MD patients, gives numerous examples of such situations.
When, for example, a Steiner's disease patient discusses the choice between human help
and the installation of a sophisticated technical device for taking a bath, and when this
discussion takes place in the presence of his wife and an SRAI10 representative - the
issue, like elsewhere, being to decide on the composition of the hybrid collective and its
organisation (is human assistance needed? is a lift needed? should the wife carry on
taking care of her husband?) - it is not only a question of the patient's body. The
discussion also concerns the body of his wife who hints that, for her, bathing her
husband is a strain and that, unlike him, she would prefer the technical solution. Thus,
the issues at stake are the woman's body, tired from having to move her husband's body,
and her husband who finds the coldness of the technical device extremely unpleasant
(Winance 1999).
b) Bodies can be described as political articulations in a second sense. In debates
on the collective and in the propositions under discussion, the body is not reducible to
an external reality about which the actors talk, and to a subject on which they eventually
have to make decisions. It is necessary to transcend this usual dichotomy in order to
understand the issues in these discussions. The actors do not talk about bodies. We
could say that it is the bodies that make the actors talk and allow organizational
problems of the collective to be put into words. This reversal warrants some comment.
Let us return to the case of the tracheotomy. This operation is a trial which
affords an opportunity to explore the different conceivable collectives and their
inclusion in the debate. But this voicing also warrants explanation. Why does the
tracheotomy, that surgical act, cause people to take position and make propositions?
Simply because it is an operation which is not limited to what one tends to consider as
the patient's body. A tracheotomy is an operation on the articulations of the collective,
the body politics. And it is because the tracheotomy is, strictly speaking, an intervention
on the articulations of the collective (it reconfigures, as we have seen, the limits and
elements of the collective and their relations) that it generates the articulation of

10
SRAI are regional AFM units which support families in their everiday life.

15
propositions on the collective11.There is not a body on one hand and, on the other,
debate on its place in the collective. The articulations of the collective are explored by
the body, and it is through and thanks to this exploration that the political debate is
articulated, in turn performing the collective and its bodies (Latour 1999). This dual
political articulation of the body politics is materialized both in the shaping of the
collective, in its embodying, thus defining it as a body, and in its putting into words, its
voicing, thus making it exist as politics.
c) A final remark: being a matter of politics, the question of voicing is, as we
know, crucial. And here again the body is engaged. It is obviously an instrument of
phonation (Leder 1990) and a mouthpiece or, as the French language expresses it, a
voice carrier: it plays a role in the distribution of voicing. The case of MD clearly
shows the intervention of the body in voicing and its delegation. In its most evolved
forms, SMA leaves its victims voiceless or, when they have been tracheotomized,
endows them with a synthesized voice, thus binding them to long and painful
interactions via computers or translators considered capable of reformulating their
words "intelligibly".12 In such cases, frequently found in the most severe forms of MD,
bodies not only explore the possible articulations but contribute also to the distribution
of speech and of spokespersons. They are then present throughout the process of
construction of the body politics.
These political articulations of the collective are very different from those taking
place in traditional political arenas of our modern Western democracies. This is because
bodies and their articulations cannot simply be ignored or presumed to all be equal or
similar and therefore excluded from the debate. Bodies are at stake because they are
affected differently and because the collective to be built has to take that into account.
But it is one thing to show the role of bodies in the political articulations of the
collective, and another thing to account for the choices made, for the mechanisms
through which certain configurations of collectives are adopted and others rejected. As
might be anticipated, bodies cannot be absent from these mechanisms. To better define

11
On the role of the body in the articulations of the collective, see the seminal work of
(Hirschauer 1991).
12
We have witnessed this type of delegation several times. In one instance the patient, having
great difficulty in making herself understood, used two intermediaries who translated her
words differently.

16
the modalities of their involvement, we are going to examine two other types of trial,
starting with the one on concessions and the forms of agency that they allow.

3. Less or more concessions: bodies as shaping agencies

In the political articulation of the collective-patient, that is, in the debates on its
constitution, one of the main questions is that of agency and its distribution.
This question that the actors themselves pose has only started to be addressed in
the most recent development of ANT. In particular, this work has highlighted the
variety of forms of agency that depend on the configurations of hybrid collectives
(Callon and Law 1995). Bodies, however, hardly feature in the description of these
devices. They appeared in the study of 'active passion' as experienced by music
amateurs and drug addicts (Gomart and Hennion 1999) and especially in the work of
Moser and Law on disabled persons (Moser and Law 1999). Yet the body, central in the
political articulation of the collective, is also a key element in the configuration of
agencies. Agencies are shaped, performed and distributed in trials involving painful and
suffering bodies. The following lines are devoted to a preliminary presentation and
analysis of these trials, which we temporarily group together under the same label:
concessions made by the collective-patient.
Consider again the case of a tracheotomy. The decision to operate is frequently
considered when the patient experiences extreme difficulties in breathing and is
congested. The operation consists of making an orifice in the trachea in order to
introduce a canula connected to a breathing machine. The child is thus freed from
muscular movements which, in a normal body, allow the subject to inhale and exhale.
These movements are delegated to the breathing machine. A tracheotomy is a trial,
mainly because it entails suffering which saps the patient's strength, but also because it
is an opportunity for the collective-patient to clarify a number of issues and to make
decisions concerning its future. In this section we focus on those concerning the
concessions which the patient and her family are prepared to make, that is to say, on
what they are willing to forego in one respect in order to obtain something else in
another respect.
Take the example of the G. family. A few years after the twins' birth, respiratory
complications emerged and the question of a tracheotomy was raised. As is very often

17
the case in these families, the parents, children, close friends and family, doctors and
members of other families in the same situation, had intense discussions on the best
decision to take. The word "decision", used by actors themselves, is appropriate for
accounting for the deliberations preceding the commitment by one of the two twins, R,
to have a tracheotomy at the age of eight. It is also appropriate for describing the
alternative opted for by the second twin, M, who refused the operation. This case is a
perfect example: two children of the same age, sharing the "same" genetic heritage,
caught up in the same environment and same discussions, bound by the same arguments
and counter-arguments, opt for two diametrically opposed trajectories. The trial is
similar but what it reveals is the irreconcilable difference between the choices of the
two twins, that is to say, between the assessment of the concessions they are prepared to
make.
What is meant by a concession? The word is used by the patients and by those
around them in their struggle against the disease. It denotes that which the collective-
patient is prepared to grant its opponent and thus to give up permanently and
irrevocably. R. grants the disease the ground it seems to have gained. He recognizes that
he cannot and does not want to breathe satisfactorily on his own, and that his muscles
cannot do what he expects them to. The recognition of this concession made to a
polymorphic opponent (the actors themselves may point to the disease, the medical
institution or even a family member pleading for the concession, depending on the case
and situation) causes R. to accept the breathing machine and to hand himself over to it.
It really is a concession with all its attendant constraints and dispossession of the self:
the constant need to have access to electricity, the impossibility of travelling, the
deformed voice of the synthesizer, etc. But these concessions, as difficult and definitive
as they may be, seem acceptable to R. in relation to what he believes he stands to gain:
easier breathing, less acute pain, mobility which, albeit limited, is real, and less
congestion (particularly in his throat). M's evaluation is totally different. This trial
reveals what R. and M. want or wish for, but also what they are and what nobody, not
even they themselves, were aware of. When we use the names R. and M. we must bear
in mind that this is merely a convenient short-cut to refer to a complex process which is
both collective and individual. This shows, in passing, the close interdependencies
between the different trials that we distinguish in this paper. By discussing the
concessions to make, R and M contribute towards the performing of political
articulations described in Section 2.

18
In the case of a tracheotomy, thanks the AFM' action, the evaluation may be
based on fairly well recognized facts since the effects are now known. This was not the
case only ten years ago when experience in the field was still very limited. The outcome
of the trial was unknown, to a large extent (and still is, although to a lesser extent),
which meant that there was a high degree of uncertainty. This indeterminacy, which
gives the trial all its weight, is found in other circumstances that are less dramatic but
equally significant, as for example in the choice of a treatment for recurrent infections
plaguing the twins:

We realized that the children were always ill, always congested and hovering
between life and death. Prof. X's synthetic products didn't work and nor did
antibiotics. We went onto cortisone and soon we were giving them adult doses
(interview with the mother).

Concessions made to drugs and to increasing doses could continue in this way.
Yet at some stage the family thinks about putting an end to this logic of a growing hold
by drugs over their lives, with its attendant constraints:

The room was full of bottles of antibiotics for curing a cold. The children were
five years old. M. kept on and on vomiting. So I went to see them and I said:
"Look, either we carry on or we try something else and we throw all this stuff
away". M. said: "We throw it all away". So we went onto homeopathy (the
mother).

To win ground from the opponent congesting the children's room and respiratory
system, the collective-patient changes tactics; it abandons antibiotics and cortisone
rather than handing itself over to them, and decides to try a new trial with an evidently
uncertain outcome. The choice is to move away from official drugs in order to move
onto alternative medicine - a truly adventurous option. Does it stand to gain ? Nobody
can tell but the risk has been taken.
These trials lead the collective-patient to throw back into question and to bring
back into play the dividing line between that which it wants to keep and that which is
keeping it, between that which it concedes and that which it conserves, between that
which it hands itself over to and that which it keeps for itself. Some of these trials are
heavy and painful: we have already discussed the tracheotomy and mentioned
arthrodesis. Others are lighter; the extent of the concessions and the pain and constraints
they entail seem smaller. One such case is BIRD, a machine which maintains the

19
suppleness of the lungs, provided the patient spends half an hour every day connected to
it. It is also the case of physiotherapy, special diets or electric wheelchairs. All these
trials are accepted in order to maintain certain functions and to open fields of action,
movements and room for manoeuvre. Attaching oneself to better detach oneself;
making concessions to conserve a space for self action.
These examples show two things. First - and this is the point that has been made
on several occasions in the literature -, the collective patient is constantly confronted
with choices. It does not mechanically follow a trajectory that is set once and for all; it
is faced with events and involved in situations it has to interpret. In the case of SMA
this area of choices is highly structured, owing to past actions by the AFM. This places
the collective in a position similar to that of a cost-benefit calculation. In these
particular cases the trial and the concessions it brings into play bring to mind a game of
chess with death, as in Bergman's Det Sjuude Inseglet (The Seventh Seal). Which piece
should be sacrificed if one is to size up the opponent and force him to surrender? On the
SMA chessboard a tracheotomy is a strategic move enabling the patient to take a stand
without determining the next move: perhaps an arthrodesis, that painful operation in
which an iron rod is inserted into the rib cage to hold it up? Perhaps the possibility,
never completely excluded - although rarely opted for - of cancelling the tracheotomy?
For other muscular dystrophies trials are less evident (e.g. myasthenia). Given the
uncertainties concerning choices (their nature and consequences) and the fragmentation
of the collective, calculation is impossible: the collective patient advances by trial and
error. Yet in all cases the idea of a concession is present, the most radical being the one
leading towards death.
The second lesson is that one of the implications of these choices (faced with a
particular event, what should be conceded to the disease?) is what the social sciences
call agency and its distribution. With the notion of concession, collective-patients are
close to ANT and its conception of agency. They recognize that antibiotics, breathing
machines, tracheotomies or arthrodesis act, perhaps in an obscure and implacable way,
but they act. What they discuss and negotiate is not so much the ubiquity of action, but
the separation between actions that can be said to be machine-like, reducible to causal
links (concessions) and actions, distributed of course, which in a sense defy these causal
determinations (what the collective patient retains as leeway, a degree of autonomy, the
ability to influence the course of events) (Collins 1995). These trade-offs are local,
situated, dependent on the configurations of the collective patient and its history.

20
Nothing general can be said about the resulting distribution (Cox and Ashford 1998;
Hendriks 1998).
Bodies play a central role in those trials that shape and distribute agencies. It is
because they are confronted with tracheotomies, with embarrassed and embarrassing
throats, that collective patients have to make decisions about concessions they are
prepared to accept13. In fact the necessity to consider the concessions to be made, with
which the collective-patient is more or less brutally confronted, corresponds to what
Leder suggested calling the 'dys-appearing' body. The silent and invisible although
present body demands attention; it calls the collective to order. It makes discussion on
concessions and consequently on the reconfiguration and redistribution of the agencies
they imply inescapable.

4. The (dis)/embodying process as producing subjectivities

Bodies contribute to political articulations. Hinging upon the structuring action


of AFM they delineate and open a public space where debates take place. One of the
implications of these debates is the shaping and distribution of agencies within the
collective-patient. This shaping of agencies, as we have seen, is related to a trade-off
that delimits concessions to be made. To concede means to renounce something which
is made visible, tangible. As Foucault showed, it is partly in the movement of
objectification and concession which comprises renouncement, that subjectivities are
produced (Foucault 1994).
By making concessions to the disease the collective patient does not only raise
the question of agencies, or rather, it raises it as a preliminary to a more existential
question: what do I have to give up to be able to say "I enjoy myself"? Both question
and answer affirm the existence of a subjectivity ('I'), while qualifying the emotional
state of the subject thus performed (I enjoy myself). This assertion of a subjectivity goes
hand in hand with that of an intersubjectivity: the patient says 'I', he expresses himself
on his own happiness, but also on that of his family (who can enjoy the situation or else
suffer because of it: 'it's going to be hard for my mother' or 'life is much better for all of
us'). Subjects reconciled with themselves or torn apart, and capable also of

13
Goffman considers embarrassment as a key notion to understand how bodies are involved in
micro social interactions (Goffman 1967).

21
intersubjectivity: such is one of the implications of these concessions, of this
renouncement.
To understand how bodies enter into the production of subjectivities14 we need
to examine how they are engaged in this dynamic of concessions and renouncement. In
so doing we consider a field in which there is a long practical and theoretical tradition:
that of technologies of the self. Foucault defines technologies of the self as follows:
"[they] enable individuals to perform, alone or with the help of others, a number of
operations on their body and their soul, their thoughts, behaviour and way of being; to
transform themselves in order to attain a certain state of happiness, purity, wisdom,
perfection or immortality" (Foucault 1994: 785)15. These technologies of the self
obviously include body techniques (Mauss 1973 {1934}). In the following we shall
focus on those practices that play on the alternation between the objectification of the
body and its subjectification, phenomenologists would say between having a body and
being a body. But rather than concentrating on this classical but nevertheless
problematical opposition, we prefer focusing on the embodying and disembodying
process.
No longer supported by muscles whose strength is waning, the rib cage of a
child with SMA sinks in and the lungs lose their ability to function. The child finds it
more and more difficult to breathe. One way of checking this fatal process is through
daily exercise which forces the lungs to alternate inhalation and exhalation according to
a rhythm imposed by a machine: the BIRD. Throughout the session the child is on her
back with her limbs strapped down to avoid sudden movements. The machine performs
the job of the atrophied muscles, i.e. inhaling and exhaling air. Generally, in the case of
young children, an adult accompanies the movement of the thorax by pressing on the rib
cage with his hands. The session may last about twenty minutes. As soon as it is over
the child can continue her usual existence.

Illustration about here

14
In French there is an apt expression for this relationship between the feeling of well-being and
the body: être bien dans sa peau ou être bien dans son corps, literally "to be well in one's skin"
or "to feel good in one’s body”.
15
Our translation.

22
Use of the BIRD is certainly a restricting and painful trial, and a concession in
the sense defined above. But the challenge in this trial is also to give back to the child's
body some of the functions it would probably lose if she refused to subject it to the
exercise. If the collective-patient can draw up a balance sheet, a comparison between
conceding and conserving, between attaching and detaching, it is precisely because the
body is at stake. Daily use of BIRD illustrates the case of a trial in which the challenge
is to enable the patient to have a body so as to be a body or, more precisely, to organize
this passage, this alternation between the two states.
The phenomenological tradition, whether philosophical or sociological, placed a
great deal of emphasis on embodiment. "I do not have or possess a body; I am a body".
Being a body is living it. This tradition, so important for the re-introduction of the body
into sociological analysis, unfortunately leads to a widening gap between the irreducible
and incommunicable experience of the subject as its own body (and not another body)
and the objectivity of the body as constructed, for example, by medical science or
others' gaze (Merleau-Ponty 1945).
What the analysis of SMA children shows, is that this opposition between "two"
bodies raised to an absolute (ontologized, we could say) by phenomenology, does not
exist as such. It is constantly constructed, overcome, abolished, remade and managed
through practices, exercises and collective and individual trials. The case of BIRD
proves that by leaving her body in the hands of an auxiliary nurse, by handing it over to
the machine which imposes its rules, the child allows herself the possibility of living her
body, of being her body, for the rest of the day. Lying on the bed, moved by the
machine and the physiotherapist, she is configured like a breathing machine. Under the
control of BIRD she is nothing more than a lung-body. Back on her feet again after the
session, her lungs take over and she can forget them. Breathing again becomes the
reflex that was waning and which, in so doing, drew her attention to it, reminding her
that she had a body and lungs that were growing weaker. Freed from BIRD, the very
moment the straps are untied and the machine switched off, she becomes her body
again, precisely because she forgets it. By agreeing to have a breathing body, to be
nothing more than a body breathing for half an hour, and by agreeing to be taken in
hand by the physiotherapist and to delegate part of her functions to the machine, the
patient opens the possibility of being her own body at another time and in other places,
at least for a while. To have a body, to be but a body so as to be her own body. This
process (should it still be called embodiment or would it be more appropriate to call it

23
"embodying-disembodying"16?) is obviously strongly mediated: there has to be the
BIRD trial and that of the physiotherapist; the patient has to cope with it. Nothing, of
course, that corresponds to the subjective, primitive and irreducible experience of living
one's own body which is boldly assumed by phenomenology.
This tension, switching or cross-over between having a body and being one's
own body, is even more complicated and subtle than suggested. The BIRD represents
an intermediate practice, between two extreme modalities that we shall now consider in
turn. In the first, alternation is impossible, with the result that an irreducible gap is
established between the objectified body and the subjectified body. In the second,
alternation, passing, is so quick that it produces a state in which there is no more
opposition between subjectivity and objectivity.
It is particularly interesting to consider some trials which are more extreme in so
far as they end up widening the gap between being a body and having one. What the
phenomenologist tradition tended to consider as a common experience is in fact the rare
outcome of a specific type of trial.
Let us revert to M. and his refusal to undergo a tracheotomy, an operation
which, in his view, implies concessions he is not prepared to make. But on what is this
evaluation based? The answer to this question leads us to our subject of interest in this
section. A tracheotomy makes speech difficult; the person's voice is transformed, made
artificial. The operation and its attendant machines re-establish the functions of the
body by instrumenting it. The patient can move faster, with less effort, and can talk - or
rather communicate - with a strange voice or by means of a computer. His
"prosthesized" body is once again able to function. Provided the scope of concessions
that have been made the body that the tracheotomy gives back to the patient is a precise
body, forever more instrumented, more machine-like. This body, as it becomes more
and more "technologized", sets the possible interactions and their course in an
increasingly rigid manner.
All the successive trials which led up to the tracheotomy and possibly to an
arthrodesis as well, give a body back to the child, but it is 'this' unique body, of which
each function is inscribed in the mechanisms and devices gradually eliminating all
flexibility, shrinking the diversity of virtual worlds open to the patient. From having a
compound, extended - but still versatile - body, the patient finally ends up becoming
"this" perfectly limited, necessary body. He has no alternative but to be this particular

16
In short: (dis)/embodying process.

24
body, with this artificial voice; this body which can be described, analysed and whose
functioning seems to follow the instructions in a handbook. The child has his body
before his eyes, sees his lungs, feels the iron rod supporting him, follows the movement
of the wheels transporting him, hears the voice which is not his own, and has a
computer which displays the message he transmits. He is completely distributed and
externalized in an irreversible and necessary configuration. He cannot escape from his
image, the mirror is there, reflecting it, trapping it.

Picture about here?

In the extreme situation of Jean-Pierre, the 45-year-old adult presented in the


introduction, the patient is nothing more than an objectified and perfectly determined
body which he contemplates, which is him without being him. Wherever he goes, the
splitting up is inescapable. This distance creates the pure subject, complementary to the
objectified, visible and alienated body, especially since MD spares the brain and vision.
It realizes the wild dream of Descartes, of Western science: the dualism of the subject
which thinks and commands and the matter which is acted on and executes: I think for I
am excorporated (Mialet 1999).
Let us turn now to another extreme configuration. Consider two trials which can
both be called a "mirror test", after Lacan. Both make it possible to transcend the idea of
a succession in time of sequences which, however close together they may be, could be
distinguished from each other and during which the patient would alternately have a
body and be his body. Having a body and being his body may be closely bound in the
trial which makes it possible to distinguish them and simultaneously to make them
complementary.
H. has just learned that his son has severe SMA. The doctors (we are in the early
eighties) are unfamiliar with the disease. They suggest that the best thing would be for
the parents to make a radical and definitive concession, to leave the child to die and
possibly even to part with him to make the trial more bearable: "We'll take care of him",
they say. H. refuses and wants to fight "with his son against the disease". The boy's
muscles are weakening? His neck is becoming limp? His knees are more and more
difficult to bend? His chest is caving in, so that there seems to be a hollow with no place
left for his vital organs? One solution, thinks his father, is to make the weakening
muscles function regularly and to make the stiff joints work. But how to intervene, on

25
which muscles, with which gestures, at which intervals, when one is not a specialist and
the specialists themselves have surrendered? H. decides to spend long periods in front
of a mirror learning to identify each muscle in his body and to clarify their role, by
making them work. He progressively defines movements and designs exercises which
he gets his son to do:

To rectify the retraction of the knee he had a lot of pain. It took two months but
he managed. It was very difficult, but we worked with the idea that the pain was
helpful (interview with the father).

The device he conceived, a mirror which reflects the objectified image of the
body, enables one to have someone else's gaze. It illustrates this passage, this coming
and going, between having a body and being a body, as well as the collective and
heterogeneous nature of the trial device.
H. objectifies his own body by means of the mirror. This is the first movement
which takes him from a state of being his body to one in which he has a body which he
discovers, explores and learns to control. Living his body, he also has a body through
the intermediary of the mirror which sets it apart, but without ceasing to be his own
body. It is the miracle of the mirror which makes these two experiences possible at the
same time and makes this essential tension visible. H. then transposes the experience of
being split into two, so that his son can share it. The father becomes his son's mirror
since he is the intermediary enabling the boy to have a body. It is a trial which is doubly
painful, both for the father who reduces his son to nothing more than a body, that is to
say, to joints which he manipulates as if they were mere mechanisms, and for the son
whose recalcitrant knees start by refusing the exercise proposed to them. In this painful
trial the stake is a new state of balance between having a body and being a body: a
balance which makes it possible to confront other trials with new resources, and one
that was built by the collective {child+father+mirror}.
The trial may be simplified even further, purified. Independently, J., the father of
a little girl suffering from SMA, designed a similar device. In the case of children with
SMA a bath is both a form of treatment and a pleasure, for hot water has beneficial
although short-lived effects. In the water the child's limbs float and she forgets her
body, but this forgetting is merely a stopgap. J. attaches a mirror to the ceiling directly
above the bath, so that his daughter can see herself. Although she forgets her body,
thanks to the water, the mirror reminds her of its existence. "I put a mirror on the ceiling

26
over the bath so that she'd be aware of her own body... It stimulates her". The little girl
can thus make her joints work, without feeling them work, by letting her limbs go under
the water and back to the surface again without any effort. She is a body because and to
the extent that she constantly checks that she does have a body. Her body is absent-
present. She inhabits it but is apart from it. Once again, we have the split, the tension,
being and having, going back and forth. It is a tension which seems to be at the origin of
pleasure or well-being. This pleasure is the ability to be no more than a body, to have a
body, knowing that one is one's own body; to be the thing and the use of the thing.
In short, the stake in all the trials we have just described is the establishment of a
more or less lasting arrangement between being a body and having a body or, more
exactly, having a body in order to be a body and vice-versa. The trials imply collective
devices and the, ever provisional, compromises result in singular configurations. To
suggest this variety we have mentioned situations in which, on the one hand, the body
ends up being almost completely objectified, creating irreducible dualism which results
in a disembodiment of the subject (no longer having a body he withdraws from his
body) and, on the other hand, situations in which, owing to devices that are just as
artificial (the mirror over the bath) the switching between having and being a body
occurs at the same moment. In the one case the body is determined, singular and
dismembered, and gives access to one world only: the mirror and the image it reflects
are unique; in the other the body is multiplied, in a sense, like the images seen in
mirrors facing each other, opening up onto a series of virtual worlds. But in both cases
an adjustment has been found, a balance in this tricky (dis)/embodying process.
What conclusions can be drawn from these different examples? First, body
techniques conceived and practised by the hybrid collective patient contribute towards
what we have called the (dis)/embodying process, that slow or fast alternation between
having a body and being a body. Second, the aim of these techniques, through the
concessions and renouncement they imply (materialized in the objectification, even
fleeting, of the body) is to lead the collective patient to a state of contentment, of being
at one with itself, expressed in the production of subjectivities and intersubjectivity
performed by sentences such as: "I enjoy myself" or "We are feeling better". Third this
enjoyment and the subjectivities it produces might be embedded in diverse
configurations, for there is no favoured configuration, no one best way. Observable
configurations are multiple, evolutive, and what causes them to be chosen is the
singularity of the bodies involved and the trajectory they follow.

27
Finally, the last and very difficult question is: how can we explain this link
between, on the one hand, bodies and body techniques and, on the other, self-enjoyment
or suffering subjectivities? Although a complete answer to this question is
inconceivable, we would like, however, to suggest some possibilities which take as their
starting point the mirror trial. This is where Merleau-Ponty's contribution is
illuminating. Merleau Ponty, in his last writings, underscores the importance of the
mirror trial in the experience of the body or rather in the experience of what he calls
"intercorporeality". He tries, through a series of suggestive metaphors, to show how the
body weaves what he calls interlacing, chiasmas17, intricacies between beings: "…with
my body … related bodies awaken, the 'others' who are not my fellow creatures as
zoology says they are, but who haunt me, whom I haunt, with whom I haunt a single,
current, present being" (Merleau-Ponty )18. He explains the existence of this interlacing
by the tension between the seeing body and the visible body: seeing and being seen
define an intermediate space, a decentering, a gap which makes the experience of
intercorporeality possible (see Mol and Law this volume). From this point of view "the
mirror is the instrument of a universal magic which changes things into a show and
shows into things, me into someone else and others into me … The mirror appeared in
the circuit between the seeing body and the visible body…"19. In other words - and that
is what the mirror trial (or metaphor) shows as a proto-example of any other imaginable
(dis)/embodying process - subjectivity takes shape at the same time as the manifestation
and objectification of the body. Collective procedures of objectification of the body
(through the mirrors, sessions on BIRD, manipulations of limbs, uses of prostheses, or
ingestions of antibiotics which, by congesting throats, make them present)20 create a

17
Chiasma means crossing over or intersection of things.
18
Our translation.
19
Merleau Ponty says that the mirror as a technical object exists only because the body is visible-
seeing; it is definitely the instrument which constitutes this in-between, this intermediate space,
and that is what allows it to grasp, reflect and capture intercorporality. "…Man is a mirror for
man. " (Merleau-Ponty, ?). The understanding of the mirror trial is essential because it is the
matrix of all those of the same order which are associated with science and visualization
technologies.
20
Scientific knowledge objectifies the body by making it visible, ever more visible. It merely
prolongs and amplifies the mirror test. The understanding of the place of science in this
(dis)/embodying process is closely dependent on an understanding of the mirror test. As
Merleau Ponty says, any technique is a body technique. We could go further and say that all
28
shared experience and produce a common reality which is both external and internal to
everyone and which makes intersubjective understanding possible. Because of its
visibility and tangibility, objectified body, as one of the outcomes of the
(dis)/embodying process, makes intersubjective actions possible: that is what Merleau-
Ponty means by the concept of intercorporeality21.
With the shaping of this rare configuration of the collective-patient in which
subjectivities and objectified bodies have been progressively adjusted, there emerges,
like an efflorescence, the assertion of self (and shared) enjoyment (Gomart and Hennion
1999). Here again the mirror, in its simplicity and generality, helps us to understand the
mechanisms at play. For Lacan the mirror phase is the phase in which the human being
is constituted. The child, still in a state of powerlessness and motory uncoordination,
imagines the apprehension and control of her corporal unity. This imaginary unification
occurs through identification with the image of someone similar as a total form. It is
illustrated and actualized through the concrete experience where the child perceives her
own image in a mirror. The mirror phase is therefore meant to constitute the matrix and
outline of what could be the future self. It is a source of jubilation because it is the
anticipation of that which is missing. It is the same experience that the collective-patient
lives, even if the configuration is different. The collective patient feels good in its body,
in that strange shared, objectified and mirrored body that it experiences through he
different (dis)/embodying techniques22. It would be pointless to want to put oneself in

science is body science, since it can exist only in the intermediate space of the perceiving and
perceived body, the body affecting the world and affected by it. Scientific knowledge is drawn
from this intercorporeality which, in turn, it makes visible (Despret, this volume). One of the
best examples is that provided by genetics which, as we have shown elsewhere, is a powerful
instrument for visualizing mutual intricacies, for revealing the flesh of the world (Rabeharisoa
and Michel Callon forthcoming-b).
21
Merleau-Ponty goes even further in linking (inter)subjectivities to intercorporeality. He
points for example to a possible theory of emotion which derives from the (dis)embodying
approach: "Anger does not refer to some prior inner emotional state, rather it is expressively
embodied in the shaking of my fist" (Merleau Ponty, 1964).
22
As we suggest, the importance of the rhythm of this alternation is crucial in the experience of
the body. We still need to acquire the means to analyse these differences which affect the
delicate balance between pain and pleasure, in particular. Let us add a word: genetics as a
mechanism for visualizing, which makes original intricacies perceptible, produces this
alternation between having and being, between seeing and being seen, and at the same time

29
the patient's place in order to reconstruct the empathy or revive the enjoyment
expressed by patients glued to their beds and attached to prostheses. Subjectivities are
partly impenetrable for us, observers, because the bodies to which they are adjusted and
which are adjusted to them are themselves out of reach of our existential experiences as
mere observers.

Conclusion

As we hope to have shown in this article, SMA - like the other forms of
evolutive MD which attack the muscles, the flesh of the body - highlights the
importance of what we have called the collective-patient and the different trials shaping
it. SMA also shows the engagement of the body in these trials and, more generally, the
impossibility of grasping the body outside these trials that it shapes and which shape it.
The first set of trials examined here concerns the constitution of the collective
(its boundaries, the entities composing it and relations between these entities). These
trials generate debates in which bodies are at stake, partly because the positions
defended and the propositions articulated concern bodies but, more importantly,
because it is the bodies which allow the exploration of the different positions and their
expression. It is for summing up this dual role of bodies in articulating the collective
that we have suggested considering bodies as political articulations.
The second set of trials, that we have grouped under the concept of concessions,
concerns the distribution of agencies and their different forms. The body is at the centre
of these concessions and balances found by trial and error, between that which is left by
the collective to mechanical action and that which is claimed as self action.
Trials belonging to the third category are related to the production of
subjectivies capable of intersubjectivity and sometimes of self enjoyment. We have
shown that the trials organized by the collective-patient mobilize technologies of the
body which produce and generate the dual process of embodying and (dis)embodying.
The body is not cut in half; on the contrary, it is the operator which allows the
constitution of this in-between, this space in which configurations, ranging from

constitutes a source of pleasure for the patients. We see this in the jubilation of some of them
when they explain the biological mechanisms of their disease or, more simply, when they say
they are happy to know which gene is responsible for their suffering.

30
Cartesian dualism to the fusion of people in the same flesh, emerge: subjectivities are
carnal intersubjectivities.
Thus, the body is multiple (Mol forthcoming; Frank 1990). But this multiplicity
is not merely the consequence of an impossible unification. The body can be grasped,
described or defined only through the different trials in which it is engaged. It is the
multiform operator that connects and shapes collectives, agencies and subjectivities,
and which thereby links up the different categories of trial, as we have noted on several
occasions. The body participates in the political articulation of the collective, and that
articulation raises the question of the agency itself linked to the body and to the
concessions made to it. The concessions, in turn, produce subjectivities. The only way
the three trials can be distinguished is analytically, for they are held together by what
can be now called bodies.23
What is the generality of these observations? Of course they are dependent of
the disease under study (SMA). We have started exploring other, very different forms of
MD, such as myasthenia, and have confirmed the fertility of the framework of analysis
proposed: the three types of trial enable us to establish a reasoned classification of the
different collective-patients encountered, and to explain the different ways in which
they evolve. This is the point at which the concept of a trajectory needs to be
reintroduced, but defined in such a way as to take into account all the elements, human
and non-human, comprising the collective. Trajectories are predictable to a greater or
lesser degree, depending on the state of the collective and especially on the degree to
which its different options are structured and visible. That is where the role of the
patients' association can be grasped fully. It has contributed towards the formalization
of scientific and clinical knowledge, but also know-how concerning daily support for
patients, which formats the area of choice between different possible trajectories for
patients and their families. This framework of analysis prompts us to reconsider the
analysis of death, the modalities of which cannot be dissociated from the different trials
in which the bodies are engaged.
Of course we still have to question the possibility of transposing our analysis to
situations which are not directly concerned by disease. At this stage let us be satisfied
with two observations. The first is that in our highly medicalized society, suffering and
ageing bodies are becoming a common phenomenon. But apart from this evolution that

23
In showing how bodies articulate politics, agency and subjectivity this approach avoids the
two symmetric dangers of undersocialized or oversocialized bodies.

31
can hardly be contested, we also need to highlight the generality of the stakes involved
in the different trials studied. Apart from what is commonly called disease, are bodies
not always stakeholders in the triple construction of the collective, agencies and
subjectivities24?

24
What probably differs from one configuration to another are the forms of collectives, agencies
and subjectivities.

32
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