Keywords

The practice of stem cell transplantation (SCT) involves the body on a very material level: anaesthesia, immune suppression, taking and implanting the bone marrow, hoping that the bone marrow will do its work in the recipient, medical supervision to ensure that the “donor” body does not undergo further side effects. Such practice similarly includes concern for the patient and her illness, and issues of how well her body will respond to the treatment and how much she will suffer from possible side effects. There is also some concern about the donor, and both her physical well-being and psychological consequences after the treatment. The family will thus be confronted with many worries and concerns during the period of illness and the time thereafter: Will the stem cells do their work in the body of the sick child? Are the side effects tolerable? Can the donor child deal adequately with the situation and any possible physical or psychological consequences? My focus is not on these medical or psychological concerns but rather on the body concepts that may be involved in SCT practices and that emerge as themes in the interviews conducted in this study. The focus on the body and its meanings for SCT illuminates the way in which familial relationships are bodily embedded and how body images frame them.

The particular practice of SCT that we studied is carried out between siblings within the family. In normal circumstances, sharing is part of family life; members share their love and ideas, good and bad moods, bread and butter, or times of crisis or happiness. Physical and psychological care for each other involves the body as well, but – normally – the body itself, as material substance, is not shared, rather the body is a “medium” of caring through touch, presence or physical support. Even more so, the body, and particularly a child’s body, is protected by the family, mostly the parents against injury or harm. In particular, on the level of care we may speak of an intercorporeal relation between the family members. Their care is not just practised by fulfilling duties, but is embodied in their daily shared life.

Interviews show that after SCT, even though the family survives, i.e. continues to exist, this does not mean it is still the “same family”. The sickness and the transplant set off a family dynamic that provokes a questioning of the family body itself and of the bodily aspects of practices and family dynamics. In our study we analyze the structure and the experiences of the family, the specific relationships, and the role of the child’s body. This last aspect is the specific focus of this chapter.

My basic concern is whether the passing on of body material could be understood simply as either an intervention in a physical body, or a matter for good decision-making and psychological care. I answer both these questions in the negative; instead, I am looking for a third position in the middle ground, involving the materiality of the body as well as the mental, emotional and social dimensions of the persons involved in these practices. This view of a middle ground involves the idea that the material and animated sides of the body merge in the concept of “corporeality”; an idea that also emerges in the concept of the family body vs. the singular body – here, the child’s body. This involves the concept of intercorporeality.

1 The Family as a Body

We usually interviewed parents and their children, the siblings, in both family and individual interviews. Siblings naturally share the genetic heritage received from their parents; after a transplant they also share body material that they have not inherited. Sharing body material is done by transplantation; hence, on an intra-generational level. After a stem cell transplant, the siblings not only grow up together but they also share bone marrow; and this can result in new bodily features, such as having an allergy only the donor sibling had (Garzorz et al. 2016). In most cases the illness of one child and the treatment by stem cell transplantation will become part of the family narrative, and has the potential to change the relationships within the family body.

How can we understand the family as a body? The answer to this question will help to make sense of the experiences and mind-sets of the families who were seeking help and medical remedy from within the family by using the body material of their own child.

A family consists of intra- and inter-generational relationships that build a voluntary and involuntary community in which each member can expect help and care from the others. Family relationships are involuntary for some members because, for instance, children have not chosen to be born or to become a member of their specific family. Iris Marion Young understands family “as people who live together and/or share resources necessary to the means for life and comfort; who are committed to caring for one another’s physical and emotional needs to the best of their ability” (Young 1997, 106). Whether a modern family definition requires members to be living together is not the issue here, and certainly children who are minors will not be living on their own. Depending on their age and capacities, acting to care for and show responsibility towards each other is also expected of them. This definition of family includes help and care for one another. In times of illness and when particular help and care are needed, or even bodily readiness is required, some families see themselves as one body.

Understanding the family as a body means seeing the family as one body in the sense of a unified system and, in a stronger version of bodily unity, expecting help in the form of bodily material as a remedy to come from within this unit.

As the mother puts it in the Lassen family interview:

  • M: And at the end of the day you also know where the bone marrow comes from and I mean (..), like I say it simply feels good inside my head that we actually found it within the family at the end of the day. (Lassen, family interview)

The idea of having the resources within the family is important. These resources are certainly material ones, in this case the stem cells, but also the close relationship within the family that is strong enough to carry them through the crisis and to find remedies. By analogy with the words of sociologists Auguste Compte and Emile Durkheim, we can say that solidarity is their “cement”. The rather romantic idea that family members are concerned for the well-being of the family as a structural unity is taken for granted, perhaps not factually, but ideologically at least, in some of the families interviewed.

When a child falls ill with a life-threatening or severe disease, the whole family is affected, often plunged into a state of crisis. A stem cell transplant affects not only the sick child but the whole family as well. The family members worry about the success of the transplant, the time before and after the stay in the hospital. But presuming that the remedy would best be found within the family body seems to be important for many families. It is a relief, and reinforces their unity.

  • NDS: Well it was actually really a relief, when we heard that Kilian was a match. And otherwise in the search, if you have to somehow (.) search for something else, that really is even more difficult and takes longer. (.) And that’s why it was really super like that. (Kötter, non-donor sister).

The relief at having “a match” within their own family implies that the child’s body actually belongs to the family; it is a familial body.

2 What Is a Familial Body?

There are two dimensions at stake: the family is seen as a body, and the individual bodies are taken to be typical for the family. The family members see themselves, their family, as a kind of unity, a body system, in comparison with other families, and they understand the individual body as being part of the family unit. Just as with a body, they act on behalf of the well-being of the family, but they also distinguish different families on the basis of the individual body features and their similarities. To take care of the family’s well-being also means caring for each person (and her body) who belongs to the family: the non-donor sibling of the Minz family emphasized a kind of “family body” whose basis was not just similarity of physical appearance but also the willingness to stand up for each other:

  • NDS: it was also obvious, ALL OF US will do it, but (.) ALL OF US, really EVERYONE knew beforehand: it’s Malle after all. (.) For some reason we all KNEW beforehand, we- both of them, like my sister already said, are so very LOHmann, that’s my father and brother’s side, er my big brother and me, we are so VERY on the Minz side, like my mum, in SO many ways and erm because of that it was all obvious and we all said it’s Malle after all. (Minz, non-donor daughter)

A family body is bound together by a form of solidarity, help and being there for each other, and by a family resemblance that sorts the body features into specific bodies of the family. The familial body belongs to the family.

The interview study shows that during the illness crisis, families responded to two guiding threats:

First, they tried to find a way to act in concert and to fix the problem within the family. As far as possible, care for the sick child was provided within the family. Even further challenges for the parents, such as working for the family income or caring for other siblings and their problems, are met with the help of the core family. Second, therefore, stem cell transplantation between siblings is based on a narrow definition of family unit. Not only are kinship relationship and blood compatibility (HLA) necessary, but in addition most parents/families almost naturally approved of the therapeutic bone marrow being given from within the family by the healthy sibling. In fact, for many families it is important for the body material to come from within the family body: there should be no foreign material to interfere with their own. The family mentioned feeling uneasy about alien body parts interfering with the familial body. As mentioned above, the Minz family feels “good” about the idea that the bone marrow came from a family member whom they know, that – “at the end of the day” when all things are considered – they found the remedy within the family.

Holding on to a narrow definition of family, and worrying about getting the life-saving body material from within it, are both supported by the idea of the family’s own body, the (imagined) similarities of body features, and established ways of how members within the family relate to one another. These relationships are strongly bodily; for infants especially, the “pre-semantic body language is vital” insofar as their “relationships are imbued with all their bodily needs, impulses, desires” (Stone 2019, 94). Families build their “typical” interactions in a highly bodily way, with members recognizing moods and feelings without much talking. The father’s typical tone, the mother’s way of moving, the children’s responses, or the patterns of interaction, are all strongly bodily engraved and part of an imagined family resemblance that generates and reassures the family as a body. Members of the family are physically close, the family shares the “same blood”, and the source of such blood, the bone marrow, is not strange but familiar, within reach, at their disposal.

Thus, on the basis of this formation of family, it seems to be easier for family members to accept their own familial body material for the reasons of similarity and closeness. This is not just because the child’s body material is more easily at hand; the interviews also mention the idea that the body is somehow similar. As one donor says: “... so I simply had the hope, because we were so similar to each other, that Jennifer’s body wouldn’t even notice, (.) that- tha- that they are different cells or strange cells, that it wouldn’t, like, twig” (Jaschke, donor). In this interview, similarity is clearly not part of a description of HLA compatibility, i.e. some kind of similarity that is medically important. Rather, similarity works on the level of personal body characteristics, or even emotional or mental likeness. In the following interview quotation the recipient reports that her father makes jokes about the similarity. These are jokes with some seriousness in them and they show that the presumed similarity is even detected in the mental life of the siblings.

  • R: my Dad sometimes makes silly comments, if it’s like (.) I dunno, if Malle, if there’s some kind of opinion about Malle or Malle is supposed to make some kind of decision and isn’t here, then he can- my Dad always says: yes, Marlena can do it, she has the same thoughts as he has, he has the same bone marrow or something like that, me and my brother, I mean we always think this is quite idiotic (laughs) or like that. (Minz, recipient)

The familial body as a system is not agonal but its unification rests on a strong notion of similarity, whether this be with regard to body features or to shared thoughts. In some families tattoos function as a “kind of bond that you can’t just SEPARATE” (Molle, non donor). They “record” that the siblings had “grown together SO strongly” (Speidel, recipient). The tattoos symbolize the family as a body and the bodies that belong to the family. The belonging is realized by family themes, by particular styles and rituals, the idea of shared responsibilities and body parts, but it is also reinforced by markers such as tattoos that are more common today than they used to be decades ago. Each period has its own signs and rituals.

The idea of similarity between the family members and of sharing therapeutic body material within the family implies that the child’s body is understood as belonging to the family. The next section therefore investigates the sense in which the child’s body or parts of the body belong to a family.Footnote 1 The very fact that a donor child belongs to the same family as the sick child has the consequence that her body is taken for the practice of SCT. Some parents see it as a matter of luck, as unproblematic, or as justifiable that stem cells can be taken from the child’s body if it is medically compatible. Theoretically, there are different models of ethical justification, such as the idea that donation of the body material (or accepting the medical intervention) would be in the donor child’s best interests, and that retrospectively the child would be glad to have helped, or that actually the child has donated voluntarily.Footnote 2 With the diagnosis of the illness, knowing that the sick body could possibly be cured by a SCT from the healthy and compatible sibling’s body, there was no dispute over whether the child’s body material would be available as a remedy. In most cases the family, and particularly the parents, acted on the basis of medical self-evidence in following the therapeutic path of taking the healthy child’s body as a remedy for the sick child.

This self-evidence is based on a particular understanding of what it means to belong to the family body. In order to clarify this thesis I will have to consider the question of how to understand the idea of belonging. How does a child belong to her family? With reference to the descriptions of the bodily relationships within the family and family resemblance, the child’s belonging is understood as a bodily belonging. We can distinguish different senses of belonging and different aspects of the child’s body. First, I consider belonging in the sense of owning the body or the child;Footnote 3 second, I spell out the reference to parts of the body.

2.1 Belonging in the Sense of Owning the Body or the Child

If belonging means parents own the body of the child, then it could imply that they have the right and the power to simply decide over the body of the child.Footnote 4 Ownership would indicate that family members may count upon the child’s body to be used if therapy is needed. According to this line of thinking, the availability of the child’s body to treat her sibling presupposes that her body is regarded as property. In his essay, “The good that is interred in their bones”, Barry Lyons asks: Are there property rights in the child? He answers that yes, the children must be taken implicitly as property (Lyons 2011, 400). This is because, first, the parents have the power in their relationship with the children; second, the concept of property implies a right of disposal (Verfügungsrecht). Lyons argues, therefore, that “the property model ...offers... the clearest mechanism to explain the parental right to authorize the transfer of biological material from an unconsenting human to a third party” (Lyons 2011, 400). There are legal constraints. Family law defines a limit: since the family belongs to the private realm and since the parents have the parental right, they have the freedom of decision (within limits) as to how to deal with their children. Despite this, Lyons laid out some lines of argument that question the implicit semantic shifts of the concept of property with regard to the body and transplantation practices.

Are children the property of their parents? Is their body the family’s property? In what sense does a child and her body belong to the family? And if a child or someone belongs to the family, does this – the belonging – entail giving body parts?

The seventeenth-century philosopher and physician John Locke (1690) emphasized the relationship between labour and property: “Every man has a property in his own person” (Book II, Ch V, § 27). Through one’s own physical and mental capacities we can turn things by way of bodily labour into our property, the fruits of our labour. But human beings are not allowed to put another’s body at their disposal, not even after death. Children are not their parents’ property, but are entrusted to them in the name of God, or put more secularly, parents have responsibility for them. Locke formulated defensive rights and, as Immanuel Kant later put it even more strongly, the right of integrity. Both lines of reasoning deny that someone has ownership rights to their own body, and even less to somebody else’s.Footnote 5

With new medical technologies, and particularly in reproductive medicine, the idea of property rights to the body have become more topical, especially with regard to ethical, social or juridical questions concerning abortion, surrogate motherhood, reproductive medicine, or tissue or organ transplantation. Property rights in the body concern, first, the issue of the body – both one’s own and the body of another – and second, the difficult problem that in terms of these property rights the body is closely associated with the notion of commodity. The two aspects are intimately related because if someone considers a body to be property, the body has already been transformed into a commodity. “Commodity” refers historically to agricultural goods and raw materials: in the capitalist tradition, as described by Karl Marx, a commodity is a good that resulted from human labour and that can be sold on the general market. In any case, the term transforms a person and her body into a physical thing that has been introduced to the market circulation of medical remedies. The idea of the body being treated as a thing, an object, or even a commodity was of major concern to some interviewees.

For instance, there is the mother (Bahr) being afraid “that child just feels USED”, and indeed the donor child is afraid she might be required to donate again in the future. Hence, imagining the child’s body as a spare parts depot does not seem farfetched. In reality, some of the donors were asked to donate more than once, giving tissues such as stem cells, blood, in one case even a salivary gland. The concern that the child’s body or the child herself will be seen as a commodity that can be used is formulated in some interviews. For some donors, a SCT and having provided a body part as a remedy certainly triggers their imagination of themselves as a therapeutic tool.

The father in the Kunow family talks about the “sibling child who is ABLE to donate... due to compatibility” and he didn’t want to put pressure on her, yet sees that it is impossible not to apply pressure and to see the child (not her body?) as a kind “of spare parts depot”. Thus, in this context the reference is not made to the body part or to some liquid, but to the whole person, as if it were the child that was compatible (and not just the HLA marker). Since apparently the thought of being a spare parts depot (the depot being the whole of the body) was vividly present, one mother (Kunow) told the child: “You aren’t a spare parts depot for your brother.... where did you get that from... I didn’t have you so that you constantly have to keep donating something or other to your brother” (Wahl, donor). The mother wants to reassure her child that she – “as a person” – is not used as a spare parts depot even though bodily material had been taken from her. A consequential question arises: is the child or (just) the body being used as a commodity? In order to tackle this question, I shall turn to a phenomenological perspective on the body and on corporeality. The question is what it would mean to regard and treat someone or someone else’s body as a spare parts depot. Here I am not just asking what it would mean for the person to be treated as a commodity. The above examples of the interview already show a concern, even a worry, that this would be the case. Rather, I want to thematize the body in its intertwinement with the person herself and her social context.

The phenomenologist Maurice Merleau-Ponty describes how a body is ambiguous, insofar as it is never just a physical object nor just a subject (self); I am my body and I have a body; and thereby I am related to and living in the world. The body is a lived body, and a person is embodied (Merleau-Ponty 2012, 431). If someone requires ownership of a body, then in this view the person herself would always be part of this property claim. One could argue that the parents claim to own the whole child. It is not only that we know, in the economic and social realm, about the history of colonialization and slavery, i.e. property on the basis of racification, or about current situations of slave-like workers or housekeepers, but also that the question of ownership is equally debated in the medical sphere. However, reference to the ownership of one’s own or another’s body runs into metaphysical problems. With regard to being the owner of one’s own body, the self would need to divide itself from the physical body in order to own it. In other words, ownership of the body presupposes a dualistic perception of human beings.

Claiming only to possess and to have the right of disposition (Verfügungsrecht) of the whole physical body does not make sense in the light of the body’s complexity, embedded in a concrete situation and in between the self and the physical. Merleau-Ponty’s concept of corporeality and intercorporeality demonstrates that the body is never just and only physical, that consciousness is corporeal and experience is embodied (Merleau-Ponty 2012, 265). The terms corporeality, intercorporeality or flesh indicate the ground from which phenomena may emerge, but they are not something to which we can point directly; rather, they are used as an adjective, for example in the sense of a corporeal experience. Corporeality as such remains anonymous. Intercorporeality underlies the relation between the self and the other, one’s own body and that of the other. Intercorporeality is for Merleau-Ponty an anthropological condition of meaning constitution, which is bound to the body interaction. Being towards the world and being with others is always already bodily. “I am everything that I see and I am an intersubjective field, not in spite of my body and my historical situation, but rather by being this body and this situation and by being through them, everything else” (Merleau-Ponty 2012, 478). Phenomenologically, the body is made of a double structure because it is always sensitive in a double way which is most notable in self-touch (Husserl 1952, 164). In touching oneself, one is touching and being touched. Merleau-Ponty elaborates on this phenomenon with regard to the relationship with the Other, which is always bodily embedded, hence intercorporeal. Proposing the concept of a chiasmic structure, Merleau-Ponty differentiates three aspects that are important for understanding the concept of intercorporeality. The body is sensitive-sentient and as such displays an ontological intertwining between subject and object among sensitive things, physiological senses and linguistic expressions. Second, there is the lack of coincidence. As Edmund Husserl had already observed, we always perceive more than there is and there is always more than we perceive. It is neither entirely I nor the “body that perceives” (Merleau-Ponty 1968, 9). The sentient and sensitive are always distinguishable because of a divergence (écart) that suspends their coincidence. Third, intercorporeality nevertheless brings the Other into a co-presence with me. The example of the handshake allows Merleau-Ponty to discuss the phenomenon of my hand touching hers and being touched by her hand (Merleau-Ponty 1964). The concept of intercorporeality refers to this reversibility of being touched and touching, but also seeing and being seen; and therefore, it opens the space for the reversibility of perspectives by closing off the possibility of experiencing the Other just as a thing.Footnote 6 Likewise, we do know that people are able to treat – and have treated – other human being just as things, commodities or instruments.

To return to the worries expressed in the interview: owning the whole child is certainly thinkable; the commodification of the child may creep in through the back door. This much we can say: when the mother declares, “You aren’t a spare parts depot for your brother...” she refers to her child (the donor) in the sense of a subject body and an embodied self. If indeed she had been used as a commodity, then it would not have been just her body but actually herself, her bodily self – she as a human being who had been turned into a spare parts depot. In other words, using someone else’s body as a thing, as a commodity, disrupts the integrity of the person.

As researchers, it is not up to us to decide whether or not the parents simply saw and used their child as a commodity, but to consider what it means now to use parts of the body as treatment for someone else and as a matter of course (Selbstverständlichkeit). Even though there is an inseparable unity between the body and a person, we can certainly envision and use separable parts of the body.

2.2 Body Parts Belonging to the Family?

Taking seriously the idea that parents do not own their children, one might still argue that by agreeing in all self-evidence to the stem cell transplant, they implicitly assume ownership of parts of their child’s body and that they have them at their disposal. Even though some parents reported not feeling as if they had actively decided on the process, they certainly agreed to transfer body material from one child’s body to the other. Thus, it seems that this discourse of agreement presupposes the division of a “physical body” into parts. However, this view needs to be questioned.

Theoretical or ethical approaches that understand the body only in terms of properties or physicality disturb an understanding of the integrity of the embodied self, the level of corporeality, bodily relationships, or intercorporeality among human beings.

The integrity of the embodied self, body, language and relationships is important for anchoring the child, or any person, in relation to herself and the world. The concept of integrity embraces the physical and psychological wholeness of the person in relation to herself and her world relationships, correlating psychologically with the person’s resilience and morally with incorruptibility. Our intercorporeal and personal relationships are the basis on which we experience and they are the network in which we act and are treated. Therefore, integrity is a term that designates a normative as well as a relational state of affairs. Thus, any decision on the treatment of a child concerns not only her body but also her relationships in which she is bodily embedded as a person. It is therefore important to realize that the embodied self cannot be fully addressed in objective terms. We find our corporeality, and also our sociality, in “the thickness of the pre-objective present” that marks the personal existence in its entanglement and “communication with the world more ancient than thought” (Merleau-Ponty 2012, 457, 265).Footnote 7 Thus, the term “corporeality” stands for the pre-existence or pre-personal history that constitutes the core of the subject in its relationship with the other and the world. The in-betweenness among people is anonymous, because of the way that experiences with the Other in her cultural and social setting take place “under a veil of anonymity. One uses the pipe for smoking, the spoon for eating, or the bell for summoning, and the perception of a cultural world could be verified through the perception of a human act and of another man” (Merleau-Ponty 2012, 363, also 223).

A bodily disturbance in terms of objectivation, fragmentation, and naturalization captures the experience of a person who feels ill. The sick body gives the feeling of falling apart. The body that one is becomes the body that one has. Perceiving someone with regard to her bodily material parts, taking her parts and thereby giving her the experience of illness and injury is an affront to the whole body subject. The integrity of the embodied subject is fragmented by being forced to feel injured and by being discussed in terms of pure material, the level of corporeality is reduced to the biomedical substance, the ambiguity of in-betweenness is forced into determining one feature, namely the HLA compatibility of body material.

By feeling into oneself, and within the phenomenological tradition of the twentieth century, authors like Husserl, Merleau-Ponty, Heidegger, Sartre and Simone de Beauvoir do not comprehend the body as a thing but as “a situation: it is our grasp on the world” or even our outline for the future (Beauvoir 2009, 68). The body is not just a thing with a context, but is bodily lived; not simply a biological object, but a subject of experience.

Since the body is a subject of experience and is situated in a situation, intercorporeality has a context of praxis that, in our study, is the praxis of medicine, the family and society. Practice includes particular ways of perceiving and sense-making, structures of behaviour and acting, and dimensions of moral responsibilities and values. Each of the fields concerned has its own paths, structures and dimensions. The concept of intercorporeality emphasizes four central aspects that are not thought of when talking about a close relationship or social bond.Footnote 8 Inter-corporeality indicates, first, the material side and, hence, that it is part of a common symbolic-material structure; second, that this structure is bound to a concrete praxis that is not actor-centred but corporeally transmitted; third, the structure does not have a beginning or end in the sense of a positivism; and finally, therefore, the bodily relationship and its further dimensions have an openness that may generate a tendency to enable or disable in the further praxis of the family and its social context. Distinguishing these different sides of intercorporeality can be helpful for interpreting the interviews and understanding the body relation in SCT praxis.

With reference to these aspects, approaching the body in terms of its corporeality and its subjectivity enables us to address how the bodily relationships between the siblings are lived following the transplant. In the case of SCT it is not just a relationship based on familial interaction, biological kinship, or a shared daily life and beliefs, feelings or narratives. More than that, it is a relationship based on a shared materiality, i.e. the same type of stem cells that grow in both bodies. It is an inter-corporeal relationship. The meaning of this particular type of sharing is grounded in the participation in a common materiality and an intersubjective field.

The transplantation of body parts may lead to an imaginary that transforms the body parts into character traits. This transformation accommodates the lived corporeality and relationality of the embodied self.

3 Body Material Lives in Personal Traits and Characteristics

After the transplant, the physical material, the transplanted bone marrow, still plays a role for some families, donors and recipients. Family members are amazed, and observe new physical attributes and psychological characteristics in the recipient. The transplant is not just a remedy that might heal the body of the ill child. The body transplant becomes part of the inter-corporeality and relationality, for the recipient and within the family. Furthermore, and perhaps even most important, the donated body material becomes the metaphor for a saviour, and stands for a new life, a rebirth.

The observing non-donor sister acknowledged the whole procedure: “... that was kind of funny, to know that the cells are taken out of one of them and PLANTED in the other…” (Rohde, non-donor sister). Generally, family members used many metaphors to describe the transformative act of the bone marrow transplant: the notions of rebirth and new life often recurred. These metaphorical uses of “birth” (Wahl donor), as well as the very concrete reference of having helped with a “healthy bit of me now inside her” (Rohde, donor), indicate the relational aspect of transplantation. Thus, the donor Wahl said: “Life... comes from me.”

A “birth” always takes place in relationship; a rebirth or a new beginning takes place when there had been “something” – life – before; and the metaphor of a rebirth or a new life is not expressed with the end directly in sight. I think, therefore, that if a donor uses the word “birth”, she expresses a particular optimism. The mother refers, laughing slightly, to a “spiritual... moment” (Molle, mother) that is involved in such a body-relation and personal relation of helping. The dimensions of the concept of life are different when the bone marrow itself is seen as “a life-saver” (Jaschke, mother).Footnote 9

  • M: I said to Janine, I er (.) I’d like to be there at the time because (.) I know it’s actually just a bag just like BLOOD, but it’s (.) a bit different, it’s bone marrow, it’s a life-saver (.) and it’s just going to go in. It’s not a big deal but I’ve simply got to to be there, it’s simply the MOMENT, now the bone marrow is going in. (Jaschke, mother)

Thus, the understanding of the body and the value-laden interpretation of the body material are put forward by some interviewees, and not by others. Some donors understand their body material as having the potential to be good or bad, helpful or not. Some of them therefore reported feelings of responsibility for their sibling’s health and for the outcome of the bone marrow transplant (both survival and after effects). Even though parents in the study told us they reassured the donating child that she was NOT responsible for the outcome, their feelings remained, sometimes many years after the transplant.

  • M: the child who donates feels responsible for it not working, and for us that really did almost happen and it WAS like that, that Zorro doubted himself and Zorro really did look for blame in himself or his bone marrow

  • F: Which is nonsense of course

  • M: Which is OF COURSE nonsense, which I also tried to explain to Zorro, that it’s nonsense (Zucker, family interview)

  • I: So how was it actually for you, when you found out that (..) Zedrick became ill again even after the first donation?

  • D: Erm I blamed myself, because my bone marrow, or I thought, my bone marrow must be bad.

  • I: Did your parents say anything about this?

  • D: No. (Zucker, donor)

Another way the merely medical discourse of stem cells is symbolically transformed is the observation by some family members that they recognized new body traits in the recipient. They formulate this in the following ways:

After the interviewer remarks that there may be “really a part of the body (.) in the other body and it lives on //and works there too//” , a non-donor sister says:

  • NDS: //Yes exactly and lives and // WORKS and also obviously works on her appearance and and on erm, oh, what else was there? (.) Karolin told us that she got implausibly hard fingernails, such UNBELIEVABLY hard fingernails so that you almost can’t cut them and that she still has now. I mean particular attributes, I think yes, they’re (.) actually appropriate for Karsten, you know, like these (.) yes. (Kirstein, non-donor sister)

The donor in the Bahr family was looking for a change of character but actually found physical things, such as hair, that had changed after the transplant.

  • D: I mean whether his character has (…) has adjusted more to mine or (.) there are things of mine in him, I can’t put it like that at all. (.) I have noticed physical things though. My brother (.) when he was erm (.) little, he had straw-blond hair (..), completely smooth and erm (..) yes, suddenly after the transplant, when his hair grew back, (.) it had got substantially darker, it had got curly, and those are things that were really obvious to me, because (.) it wasn’t like that before and erm (.) was when- (.) as a child I was terribly enthusiastic about it, yes, but that’s (.) in inverted commas a detail, (.) he’s actually still the person he was before, but for him to change physically over such a detail, how can that be, it it can overturn everything like that? (.) Erm (..) but in terms of character I can’t say that, it’s too long ago or perhaps I was too little as well. I can’t say that precisely. (Bahr, donor)

There was an attention to bodily traits and the physical and hormonal changes, as well as to emotional ones, that were observed. Family members wondered, or even worried, that the transplant had changed the recipient because of the donor’s body substance.

  • D: Well I NEVER thought like that (.), erm, now my sister is (laughs), yes, the same as me, how stupid, now I’m no longer unique or something. (Rohde, donor)

  • F: What we asked ourselves as well, by the way, at that time for example they, it was this thing, well yes, after they’d explained it: it’s now MALE blood that Marlena will be developing, not female any more. What does that mean actually, later on for SPORT, if they really get the idea to do a blood test and erm and so on and so forth. We asked ourselves that at that time and erm I don’t even remember which doctor we talked to about it and then he said: yes but (.) you can explain it like this and it’s nothing that enhances performance or similar, it’s just disconcerting. (Minz, father)

Even gender aspects came up when the donor and receiver were of the opposite sex. The gender aspect was formulated in a very stereotypical way, such as the “soft, feminine.... Perhaps it affects the hormone system a bit” (Wahl, mother). On this level of character traits, family members (and actually there was no noticeable difference between parents, donor or recipient) were unsure but wondered whether a change of character would be noticeable.

  • D: even if you think it maybe sounds a bit odd but I KNOW who that person is, a BIT of whom my brother is carrying around in him (.) and (…) I don’t know. Maybe that might have (.) changed more of his character of it if you knew that it was (.) a stranger (.) like in- in the place of my brother, so that it was a stranger- (.) or an unconnected part (.) and whether that maybe would have changed something for him or for someone in the family. (Bahr, donor)

Some people imagine the body parts – the stem cells, the bone marrow – as being character laden, but at the same time they also feel that it is “nonsense of course”. The medical discourse of transplantation seems to guide their thinking, that in fact the body material is just physical and has no influence on bodily traits, and certainly not on the psychological level. Yet family members – people in general – do not relate and are not bound to one another in terms of what medical vocabulary phrases as real. They need signs and imaginaries of relationship and family narrative. Perception and imagination are intertwined. The phenomenon of what is seen as change or a new characteristic is intersected by a real imaginary, formed by the discourse of the already embodied past and anticipated future. Following Jean-Paul Sartre, Merleau-Ponty explains that attention to or expectation of something will allow oneself to be affected by what had already been on the horizon of the expected and pre-known. “Imagination is without depth; it does not respond to our attempts to vary our points of view; it does not lend itself to our observation. We are never geared into imagination” (Merleau-Ponty 2012, 338). Observing such described changes in the recipient and her body seems to trouble people to a degree. Their abstract judgement allows them to “know” that it is “nonsense”, but their perception lets them see that the stem cells have changed the body of the recipient. For these observers it is conceivable, certainly in the realm of the imagination, that along with new stem cells new character traits have also been introduced into the recipient. And if body material had been taken from a stranger and introduced into the family, then new characteristics would also have been introduced into the family. The family resemblance, which supports the idea of the family as a body, would have been threatened. If all of this is true, and in view of the description of the family body, for those who worry about the unity of the family it is better to have a donor from within the family, and not some stranger.

However, not all interviewees shared this view; others understood stem cells as merely physical things, as nothing special. A bit provocatively, the interviewer asks the recipient Preuss whether it would be an issue for  her to have a “piece of Pascal in you”. But actually her response was that she would not think “much about it” (Preuss, recipient).

In fact, many family members say that they don’t think much about it.

  • F: Like it’s (..) it’s exactly like if you, you know? receive donated BLOOD or something (.) after some sort of accident you know, it- it’s actually nothing really strange (.), that I’ve now got (.) a stranger’s blood in me, I dunno. So me- like for ME personally (.) it’s not. That moment when- when- when she- when she received it from him, that was (.), like. That was a really big moment, like, but right now, that bit of Pascal that’s (.) in Pia, that’s (.), I dunno, like for me personally (.) not (.), not anything special (laughs). (Preuss, father)

Although some might feel that having received body material from a sibling is nothing special, it still opens up space for new imaginations, perceptions and family narratives. The sense of the corporeal and the novel relationship are taken into a new realm of meaning constitution.

The imaginaries include issues of responsibility and the metaphor of “birth”, bodily and psychological character traits, and rather impressively, the distinction between one’s own self and the strange. The idea of distinguishing between the family’s own traits and a possible new character that belongs to a stranger presupposes that the body sharing takes place within the core family.

4 Intercorporeality and Body Sharing

Children are generally supposed to share all sorts of things. Immanuel Kant considered that a child should learn to share her bread. The requirement to share alludes to a fundamentally civilizing task of solidarity. Sharing a piece of bread means that, once given to and eaten by someone, it will be gone and digested by the person to whom she gave it. When she shares a toy, she might get it back; and sharing a music file means that one doesn’t really give away anything, because sharing means copying it. Again unlike a slice of bread, if bone marrow is given then – if all goes well – it will be reproduced in a functionally identical manner; but it does not stop there, because it continues to grow, and to be incorporated into the new body. It becomes a narrative part of the life story of both donor and recipient. For sandwiches, on the other hand, incorporation means their destruction; but they would go mouldy if they were not incorporated.

When sharing blood stem cells the donor gives away body material (by way of a medical intervention), she experiences side effects, and in the end her body replaces what has been taken. She gives life without losing life. For the recipient it is important for her body to accept the given material; the bone marrow must become part of her body in order for her to survive. In the interviews, the mode of sharing a bodily part came up as something very special.

  • D: I’m really and ‘cos we were als- also so SIMILAR, I can only EMPHASIZE that we really (.), I don’t know if the DNA is so similar or whatever is so exactly alike, (.) that tha- it was just relatively rare for siblings to match so perfectly (.) and I thought that was somehow cool. I thought it was REALLY cool, as our characters are basically different (.), but inside (.) we were kind of THE SAME (..). I thought it was so fascinating that you can be so different on the outside yet be so much the same on the inside. (Jaschke, donor)

  • NDS: well (..) he saved her life and [there’s] so much (.) similarity and [they’re] so much the same that they now also share through the shared bone marrow, that is (.) something very special. (Minz, non-donor sister)

One mother reports that she sees sharing bone marrow as creating a very special bodily bond, “a tighter bond to one another” (Zucker, mother). A bodily similarity is imagined because of the transplantation. The aspects of saving life and similarity create a bodily relationship between the siblings of a form that is usually not imagined. A bodily relationship seems different to an emotional closeness because the former stresses the material side of inter-corporeality that interacts between the body subjects.

Similarly, a mother would say the siblings had already had a close relationship, but this had become even deeper because of the transplant and because of sharing the “same thing”.

  • I: did it feel strange that somehow left behind in Klaas (.) was a piece of Kira? M: No. (..) no. (.) through it all, ’cos, ’cos they were SO (..) so CLOSE to each other, erm it wasn’t an UNRELATED body (.), you know. (Kunow, mother)

  • - siblings were “closed”, “it (singular) wasn’t an unrelated body”. (Kunow, mother)

  • The mother reports that non-donor daughter believes that because of the “same thing” ... “flowing through them” the siblings are bound a bit “closer together”. (Kunow, mother)

  • I: Also in their relationship, well not right now...

  • M: Exactly.

  • I: ... only through their actions, more like

  • M: yes.

  • I: ... that they are otherwise connected than they were beforehand?

  • M: Exactly. (Preuss, mother)

These two mothers talk about the closeness of the relationship based on the siblings sharing the “same thing”, that is, the blood created from the same stem cells. The idea that, by transplanting the stem cells and having them grow in the body of the recipient, they would perhaps change and become less like the previous body, does not occur to them. The material side of an intercorporeal relation is thematized and evaluated.

But reality and its observation may be manifold, and for some interviewees the transplant does not change the relationship much.

  • M: Well, the relationship is exactly like it was before (.), oh, sometimes I think: rather more distanced perhaps because of the age difference or something, I don’t know, perhaps [when they’re] doing gymnastics, they’ve got their (.) similarities, but otherwise no. (.) NO like I said the doctor asked as well, that MUST make such a bond between the two of them, (.) I say: no, I don’t notice anything of that, I mean outwardly you don’t see anything. Mhm (negative) (Kötter, mother)

In this quote, the mother reports two observations: the relationship between the siblings seems not much different, perhaps even more distant; and she also refers to the problem of not being able to see anything from the outside. What could she possibly see? Behaviour that shows closeness by common social standards, a similarity in opinion, emotions or character traits. In this article, I have discussed some of these aspects, with the concept of intercorporeality placed quite centrally. This, however, is something one cannot see from the outside or report on. The atmosphere of intercorporeal closeness can be felt in a horizon of practice, yet as soon as it is reported about, its pre-conscious horizon is transferred to the level of recognition and expressed imagination.

Interestingly, most parents actually observed a close tie between the siblings: but this bodily relatedness is not something that is always consciously formulated or thought of. The interviews also show a whole set of imaginaries that may ground or simply add to the family and sibling’s intercorporeal relationship. Certain imaginaries may be necessary to pursue a practice of transplantation at all, and the practice may give rise to others. The intercorporeal relationship is basic and primary. Thematizing it may show the attitude of body transformation behind the distribution of body parts. It is a material approach to the human who has a body in the sense of a living substance. This substance can be bio-technically defined and made available. Availability implies rights of ownership and access.

On the basis of medical progress and medical-ethical understanding, the body or body parts imply a reinforcement of the Cartesian dualism of substances: namely as raw material (“nature”), as productive and reproductive substance (“life”), as a means to produce other body substances (resource, “instrument”), as a useful thing, commodity, donation or remedy. Thinking in terms of the history of ideas, it is not self-evident that an internal, life-supporting body part is donable at all. If is understood as a material substance, the body is easily divisible. Thus a body substance can be distributed like a “useful thing”, a piece of bread. After a transplant, such distribution is re-transformed in a family narrative and in corporeal relationships. Considering the work of Merleau-Ponty in reference to SCT practices, the idea of intersubjective relationships becomes one of intercorporeal relationships that much better illustrates the pre-objective ability to encounter the other and to feel close to her. The family members reported on their relationships, but whether these reports actually have access to the understanding of the intercorporeal dimension is left to the reader to decide.