Abstract
Sociocultural meanings accorded to infertility, and rapid developments in assisted reproductive technologies, have long been central concerns in feminist and social scientific research. However, knowledge is scarce concerning how individuals make sense of infertility when it is disclosed in adolescence, for example as the result of an ‘atypical’ sex development, rather than as a result of failed conception. This article examines how understandings of desires, kinship and ‘solutions’ take shape and are negotiated in the accounts women give of infertility resulting from ‘atypical’ sex development. Through a thematic analysis it demonstrates how the interviewees described their desire for relationships and connectedness, which they considered to be made possible through pregnant embodiment, and details how these desires connected to a preference for medical ‘solutions’. Specifically, the article discusses how the interviewees’ accounts exemplifies how biological kinship can be ‘done’ without giving precedence to genetics. By addressing the specificities of finding out about infertility as a result of ‘atypical’ sex development, it furthermore highlights gaps in the common medical definition of infertility. These findings underscore the urgency of examining how definitions of infertility obscure certain experiences and consequently limit affected individuals’ access to support and treatment. In conclusion, it is suggested that the article contributes to a more positive discourse on infertility in feminist scholarship by teasing out the temporal dimensions of how affected individuals ‘make active use’ of assisted reproductive technologies to mitigate uncertainty and maintain hope, while at the same time renegotiating dominant norms of kinship.
Introduction
Imagine being told as a teenage girl that you have no uterus, even though you have functioning ovaries, or alternatively that you have no ovaries or ones that do not work, but that you have a functioning uterus. How do you make sense of infertility resulting from such conditions and of potential ‘solutions’ to it?
This article presents a thematic analysis of interviews with women diagnosed in their teens with conditions that fall within the broad categories of ‘disorders of sex development’, ‘variations of sex development’ or ‘intersex’, and which most often result in the inability to conceive through intercourse. It aims to examine how desires, kinship and ‘solutions’ are construed in these women’s accounts of their infertility. It also aims to investigate how understandings of pregnant embodiment take shapeand how concepts of kinship are negotiated in such accounts.
In this analysis, assisted reproductive technology is seen as complex matter. On the one hand, it may enable women to be released from biological constraints and take control of reproduction. On the other hand, it may contribute to strengthen understandings of female bodies that reiterate narrow norms about womanhood and motherhood, heterosexuality and kinship (see, for example, Franklin and McKinnon, 2001; Letherby, 2002a; Thompson, 2005). While a number of studies have explored infertility in light of these complexities, little attention has been paid to the role of gestation and pregnant embodiment in the reasons given by individuals for considering assisted reproductive technologies. Even more scarce is research on the ways in which women make sense of infertility when it is disclosed in adolescence, rather than as a result of failed conception.
The article demonstrates how interviewees construed pregnancy as a process that could allow them to establish a sense of relatedness and connectedness. It indicates the ‘solutions’ they envisaged as a consequence of their understanding of pregnancy, and shows how they considered medical ‘solutions’ the easiest option in terms of making sense of their future. Finally, it discusses how the specific details of these women’s experiences of infertility can help problematise medical definitions of infertility, and how the analysis can contribute to a deeper understanding of how individuals ‘make use’ of assisted reproductive technologies, for example, in the light of temporal specificities involved in their infertility.
Theoretical backdrop
Infertility – stigma and ‘solutions’
Shared sociocultural discourses affect people’s and societies’ expectations of women who, voluntarily or involuntarily, are able or unable to conceive (Earle and Letherby, 2007). For example, the conflation of womanhood and motherhood has been shown to legitimise dominant sociocultural beliefs and practices regarding the nuclear family, heterosexuality and genetic parenthood (Whiteford and Gonzalez, 1995). Similarly, medical conceptualisations of infertility as ‘the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse’ (Zegers-Hochschild et al., 2009: 2686) have been criticised for conflating the biological condition of infertility and the social condition of involuntary childlessness (Letherby, 2002a; Sandelowski, 1990).
The strength and persistence of the stigma of infertility has also been seen to result from an increase in ‘new pronatalist’ discourses, which have developed in Western societies since the 1970s in response to the ways in which second wave feminism de-emphasised the positive importance of motherhood in women’s lives (Morell, 2000: 315). Expressing ‘politically powerful and institutionalized beliefs about who should become a mother and under what circumstances’ (Morell, 2000: 315) such discourses reinforce stereotypes of biological motherhood as being situated in heterosexual relationships, and corresponding negative interpretations of infertility that emphasise social loss and medical hope (Morell, 2000).
When these discourses gain precedence, and when successful pregnancies are seen as an expected biomedical event in the life course (Earle and Letherby, 2007), experiences of infertility can disrupt life course expectations, everyday lives and relationships of affected individuals. Such disruptions, Exley and Letherby (2001) argued, may resemble those of a terminal disease. Moreover, since individuals affected by infertility go against the norm, the infertility experience has been shown to go from an acute and unanticipated life crisis to a chronic crisis tied to grief and guilt (Whiteford and Gonzalez, 1995: 28).
Scholars have also underscored the importance of acknowledging and investigating the complexities of technologies that aim to ‘solve’ infertility (e.g., Franklin, 1997; Peters et al., 2007; Thompson, 2005). Some have argued that these technologies free women from biological constraints and facilitate reproductive choice and control, while others have argued that they medicalise female bodies in ways that increase patriarchal oppression (see Szewczuk, 2012). However, it has also been proposed that such technologies fundamentally represent both stances. In other words, they make it possible to break free from bonds of old cultural categories of affiliation, and at the same time they consolidate hegemonic ways of classifying and valuing human beings (Thompson, 2001: 199). Along these lines, Charis Thompson (2005) argued that assisted reproductive technologies involve a dynamic coordination of a range of aspects, including technical, scientific, kinship, gender, emotional and legal. To get on with the task at hand – to produce ‘parents, children and everything that is needed for their recognition as such’ (Thompson, 2005: 8) – these aspects are brought together in a balanced ontological choreography.
There has also been a call for greater acknowledgement of the multiple ways in which women may experience childlessness (Letherby, 2002a, 2002b; Ulrich and Weatherall, 2000). Gayle Letherby (2002b), for example, has argued that infertility need not imply complete despair, but can be associated with ambivalence where the possible loss is managed pragmatically. To understand this ambivalence, and to counter the way in which women who turn to these technologies have been portrayed as bad, mad or desperate, there has been a call for a ‘positive feminist discourse about women who want, but can’t have, children and who pursue motherhood through medical and technological means’ (Ulrich and Weatherall, 2000: 325). This article contributes to that endeavour.
Assisted reproductive technologies and kinship
In Western contexts, kinship has commonly been conceptualised as a set of relationships based on biology, and kin relations have been understood as based on the human ‘necessity’ to procreate. In other words, a child is presumed to be tied to those people whose genetic substances were involved in its conception, and thus everyone is considered to have biological or genetic parents (Edwards et al., 1993: 14). Similarly, in Western contexts and elsewhere, DNA has often been seen to represent an ‘objective measure for family relatedness’ (Haimes, 2003: 16).
This dominant cultural ideology of a particular form of biological parenthood, some suggest, provide the underlying rationale for an individual’s use of assisted reproductive technologies (Becker, 2000). As biological parenthood often constitutes the basis for the concept of a ‘child of one’s own’, adoption or other social ‘solutions’ to infertility are seen as second best options (Brakman and Scholz, 2006). At the same time, the development of reproductive technologies makes it possible to separate biological (genetic and gestational) and social parenthood in ways that would not otherwise be tolerated (Edwards et al., 1993; Franklin and McKinnon, 2001).
It has also been argued that the introduction of egg donation and gestational surrogacy specifically contributed to changing how kinship and parenthood are understood since these practices enable one woman to provide the genetic material, while another woman’s body provides the substances (blood, oxygen, placenta) from which the embryo develops (Thompson, 2001). Egg donation and gestational surrogacy may thus result in interpretations of kinship in which shared substances are seen to provide more intimate connections than shared genetics, and as ‘more uniquely characteristic of motherhood, as genes are shared between many different kinds of relations’ (Thompson, 2001: 178). In a study of in vitro fertilisation and ‘womb-centrism’ in the Vietnamese context, Melissa Pashigian (2009) similarly addressed the significance of shared substances. She argued (Pashigian, 2009: 44) that, in the Vietnamese context, the notion of biological relatedness is understood in terms of the shared experience of mother–foetus gestation. The womb thus becomes a ‘site-for-relatedness making’, allowing for a ‘salient and emotive relationship [between the mother and the child] that begins before birth and continues after’ (Pashigian, 2009: 44).
To summarise, understandings of kinship are made explicit and renegotiated through assisted reproductive technologies precisely because they aim to assist procreation (Edwards et al., 1993). In the wake of these developments, kinship should be understood as being ‘done’ rather than as a fixed category or as a matter of ‘being’ (Edwards et al., 1993; Franklin and McKinnon, 2001; Strathern, 1992).
Contextualising the study
‘Solutions’ to infertility in Sweden
In Sweden, medical treatment options for women whose infertility involves a lack of eggs, or whose eggs are defective, are restricted to egg donation with in vitro fertilisation (SFS, 2006: 351). Furthermore, since the law specifies that if ‘the egg is not the woman’s own, it must be fertilised with the husband’s or cohabitant’s sperm’, single and lesbian women in need of an egg donation are excluded from treatment (SFS, 2006: 351). The treatment is included in the public health insurance and can only be performed within public health care, but the number of attempts covered differs between regions.
Since gestational surrogacy is not allowed in Sweden, women who have eggs but no uterus have no legal options for having a genetic child (SFS, 2006: 351). Recently, however, Swedish researchers have transplanted uteri from live donors to nine recipients. Two of these have had to remove the transplant, seven pregnancies have been accomplished (Bokström et al., 2016), and in media it has been reported that six children have been born. It is currently discussed whether the intervention should become part of general health care (Läkartidningen, 2016).
Finally, Sweden allows adoption in married heterosexual couples, same-sex couples registered as partners and single people. However, the adopted children’s countries of origin often have specific requirements regarding age, health and marital status, for example. Furthermore, prospective parents must take a parental education course and undergo a suitability assessment (MIA, 2014). Inter-country adoption is by far the most common form of adoption in Sweden (Socialstyrelsen, 2008: 136); only 10 to 20 national adoptions of infants and toddlers are carried out in Sweden each year. The cost for an inter-country adoption is about 100,000 SEK (Swedish Krona) plus travel expenses (MIA, 2014).
Material and methods
The 23 women who took part in the study had all learnt that they definitely or most probably could not become pregnant through penile-vaginal penetration. Furthermore, their infertility was not detected as a result of attempting to conceive via (hetero)sexual penile–vaginal penetration (cf. Zegers-Hochschild et al., 2009), but was revealed when their ‘atypical’ sex development was discovered in adolescence.
Turner Syndrome, which affected 13 of the interviewees, is a condition occurring in about 1/2500 women. It typically causes ‘dysfunctional’ gonads, which is why egg donation is usually required if the woman wants to become pregnant (Sheaffer et al., 2008). Ten of these interviewees stated that they had been told that egg donation most likely or definitely would be required should they wish to become pregnant. The remaining three were uncertain about their need for egg donation. Furthermore, five of them had had an egg donation; of these, one was pregnant at the time of the interview and gave birth shortly afterwards, two had delivered one child, one had delivered two children and one had delivered no children.
Nine of the interviewees with Turner Syndrome were recruited through the Swedish Turner Association, three through blogs and one through a specialist clinic. The interviews were conducted from 2009 to 2012. Because of initial recruitment difficulties, the group involved a broad age range in terms both of age at the time of the interview and age when diagnosed (see also Guntram, 2014). Eight of them were 18 to 25 years old at the time of the interview and five were 26 to 35 years old. Two had been diagnosed when they were 4 to 5 years old, nine when they were 8 to 12 years old and two when they were 13 to 15 years old. However, despite the wide range, the accounts of their infertility still indicated distinct patterns.
The other ten interviewees had found out in adolescence that they did not have a uterus, and either had no vagina or only a ‘small’ one – also known as uterine and vaginal agenesis. All these interviewees had had medical examinations to confirm their diagnosis, and seven of them referred to Mayer–Rokitansky–Küster–Hauser (MRKH) Syndrome when they spoke about their condition. MRKH, which is found in about 1/4000 to 1/10,000 females, involves a congenital absence of the uterus and of all or parts of the vagina, but does not affect the ovaries. These women cannot menstruate or conceive, and may have difficulty performing vaginal intercourse (ACOG, 2002). All of these interviewees had these symptoms and had been told that they could not become pregnant. Five of them were recruited through specialist clinics, four through blogs and one through an advertisement and the interviews were conducted in 2009 to 2010. The interviewees were 20 to 26 years old at this time, and had discovered their symptoms when they were 15 to 18 years old.
The study followed the ethical guidelines of the Swedish Research Council (Hermerén, 2011) and was approved by the regional ethical board. The interviewees were given oral and written information about the project; they were informed that the data collected would be treated confidentially, and that they could end the interview whenever they liked. They all gave oral and written informed consent in terms of participating and being recorded during the interviews.
The semi-structured interview guide focussed on what it was like to find out about and live with ‘atypical’ sex development. They were asked to describe how it ‘all started’, and follow-up questions concerned adolescence, the present and the future, with a specific focus on relations and interactions with others (Guntram, 2014). Twenty-two interviews were conducted face-to-face and one over the phone, because the interviewee lived abroad at the time. The interviews lasted approximately an hour and a half. They were all recorded and transcribed verbatim. During this process, all names were replaced by pseudonyms. Women with Turner Syndrome were given names beginning with T, women with uterine and vaginal agenesis were given names beginning with an A.
Analysis
An interpretive thematic approach (Guntram, 2014; Braun and Clarke, 2006: 81) was deployed to analyse how the interviewees made sense of their infertility. After infertility and childlessness had been identified as overarching themes in the interviews, a closer reading highlighted the women’s desire to know what pregnancy felt like, and how they planned their future. The procedure did not involve breaking the data down into individual codes, but instead sought to identify similarities and divergences across larger sections of material. The subsequent readings focussed on the meaning, underlying assumptions and conditions of the identified themes (Braun and Clarke, 2006). It aimed to understand why the interviewees talked about their concerns in one particular way and not in others, and what the identified themes revealed overall about the topic of concern.
The analysis focussed specifically on how the interviewees constructed a range of plots for what was happening to them and what might happen in the future (Kirkman, 2002). This type of ‘subjunctivising’ strategy thus expressed a ‘wish, or a contingent or hypothetical event’ that could help keep hope alive and bring about some miraculous outcome (Kirkman, 2002: 63).
Findings
Diagnosis and devastation: a backdrop to the interviewees’ desires and preferences
When the interviewees learnt about their condition, they were not at a point in life where they were planning to have children, and most of them had not even had an intimate relationship or intercourse. They nevertheless described the news of their infertility as a disruption to how they envisaged their life trajectory (for a discussion on the interviewees’ negotiations of female embodiment and normalcy, see Guntram, 2013). All but two also indicated that before their diagnosis they had assumed they would become pregnant and have children in the future. Alice said that the worst consequence of her diagnosis was her infertility because she ‘always had wanted to have children’. Teresa likewise explained that
I’ve always been very fond of children. I used to play with my baby dolls for hours when I was growing up. So I’d taken it for granted that I’d have children of my own. But when you get the diagnosis, that is completely destroyed.
For some, the devastation lingered on. Amanda explained that she, after having lived with the condition for about 8 years, had begun to grasp its implications and at the moment she found that the infertility was the most disturbing aspect. Others had been looking for ‘solutions’. Andrea, for example, said that she, along with her mother, aunt and grandmother, had been trying to obtain information:
We are trying to check out surrogacy and those kinds of things. And we have heard that they are trying to transplant uteri.
Yet another way of talking about infertility was found as some interviewees stressed that they were not too worried about their infertility at the moment. Children and having a family were still matters for the future. Tammy explained,
And kids and all that, I suppose you have to take it as it comes. I suppose the issue is more about being reminded about it again. So, about the future … yeah, we’ll see.
Likewise, Tina underscored that there are good alternatives if one is not able to get pregnant, yet remarked that ‘that’s a future discussion’.
Against this backdrop, despite it demonstrating some variations with respect to how the interviewees approached their infertility (see also Guntram, 2013), a strikingly coherent pattern was found across the data with respect to how the interviewees talked about their desire to become pregnant in the future. In the following section, I specifically demonstrate how desires were construed in terms of relationality and connectedness, so that some solutions appeared easier and were preferred to others.
Construing pregnancy as a matter of relationality and connectedness
When first touching on their desire to experience pregnancy, the interviewees described it in rather general terms. Thyra said that although she had some concerns about egg donation, she would still try it because she ‘do[es] want to get pregnant’. She explained,
You know, it [to be pregnant] would be nice and kind of fun and all that. It’s something that you don’t want to miss.
Amelia likewise said that although she had not been particularly focussed on children, she had still begun to wonder what pregnancy was like:
At first, it was … I was devastated about being deprived of the opportunity. But it was not until a bit later that you start thinking about what it would be like to be pregnant. Because you won’t experience it yourself. And then you start to wonder, ‘What is it really like to carry a child?’ And what is it like to give birth to it … And kind of … I mean all that comes with it. It’s definitely a lot about that, and of course you think about it, you wonder.
Theodora and Tara likewise focussed on the experience of carrying a child. Theodora explained,
I knew that I’d be able to have a child, in some way or another – you know, through adoption or whatever. But, you know, not getting to carry a child and walk around with your pregnant ‘belly’ and all that – that’s been the big thing to me, kind of. That’s what I feel has been the most difficult part.
Tara was also clear about her goal:
Tara: My goal was to carry a child. I really wanted that … [Author]: What was it about carrying the child that felt important? Tara: I don’t really know. I really don’t know exactly. I think I just wanted to experience the feeling, I suppose. I don’t know really, but it was probably the feeling that I wanted to experience, basically … the feeling of carrying a child.
Here, the women’s desire was not simply framed as being about ‘having’ a child. As Theodora remarked, this could be done in some way or another. Rather, their desire concerned the specific process of pregnancy or, as Amelia put it, ‘all that comes with it’.
Some interviewees further specified the significance of the process of pregnancy by highlighting that the bodily changes that take place, such as enlargement of the abdomen, made specific relations and types of interaction possible with others. Angelica, for instance, explained that when she felt depressed about it, she was particularly sad about not being able to experience certain types of interaction:
I guess it is about not being able to … never being able to ‘walk around with my big belly and eat liquorice boats’ … So I suppose it’s that part of it and, you know, people who come up to you and feel and touch. I guess it is really that part of it, the actual process.
In this account, the desire was described as involving a process that enabled specific types of interaction. Others distinguished their desire in terms of wanting to share the experience of pregnancy in relationships with particular others, specifically through the bodily changes associated with being pregnant, such as cravings or a big belly. Anna, for instance, stressed that she would very much like to share the experience of having a child with her partner. Likewise, Alexandra emphasised the experience of sharing a pregnancy with a partner, particularly noting
that you’d never get to feel the child kick, that you would miss a lot, and also, kind of, to tell the guy [the father] ‘I’m pregnant!’ and that he would be really happy.
In these accounts, bodily changes associated with pregnancy were presented as significant, perhaps even strengthening, aspects of relationships with a present or future partner.
However, the interviewees not only described their desire for pregnancy in terms of interactions and relations with others, but also in terms of closeness with a child-to-be. An example from Agnes’s interview brings this out.
To me, I don’t know, but I think I would miss experiencing the closeness, you know, to have carried a child for nine months, and it has grown and you have been feeling sick and what have you – you know that closeness is in a sense somewhat different if a child [as in adoption] just suddenly enters your life. If you adopt, there is of course another kind of waiting and preparation … But I suppose it’s about having a life inside me that grows out of my body in a sense that kind of … and it is also immensely difficult to imagine what that feels like, and not having the opportunity to choose, that’s what I miss the most, I guess, because there is no question that I’ll have a family, in some way.
In line with previous accounts, Agnes emphasised that it was the bodily changes of pregnancy – in terms of feeling sick and experiencing the growth of the foetus – that she had been missing. However, in this kind of account, pregnant embodiment was construed as enabling a particular bodily connectedness with the child. Tanja, whose daughter was conceived through egg donation, similarly stressed that women can feel connected through pregnancy. She explained,
I actually carried her in my belly all that time so … then … we do have a bond, or however you put it. And I’ve come to realise that you’ll also get that with adoption, only it happens in another way, kind of.
In highlighting that this closeness can be achieved by other means, the account brings into question dominant discourses that stipulate the significance of genetic linkage (Edwards et al., 1993).
Previous research has shown how the significance of genetic linkage can be negotiated ‘pragmatically’ – that is ascribed greater importance by those who can achieve it and approached more ambivalently by those who cannot (Becker, 2000; Van den Akker, 2000). In contrast, and more in line with conceptualisations in which biological kinship is understood to be defined by sharing substances (see Thompson, 2001), the majority of the interviewees in the present study, as indicated in the above examples, focussed on other dimensions of connectedness. Like Tanja, Amelia suggested that if she adopted, ‘it would still be just as much my child or my family’. Others even more specifically presented the connectedness enabled by pregnant embodiment as a signifier of having a ‘child of one’s own’. This was illustrated, for example, by Tilda, whose ovaries had been surgically removed because of the risk of cancer at the age of 11:
For a while I thought that I didn’t have … that I couldn’t have children of my own. But then I was told that I can have my own children through egg donation because the uterus is still there … Author: What was that like, to find out? Tilda: I was very happy when I found out that, ‘Yeah, but you can have children of your own.’ But then I know, of course, that I cannot have my own genes … but that’s not a problem for me … because that won’t change my feelings about the baby! And I hope it won’t matter to the man either.
The account demonstrates that Tilda was well aware she could not have a genetic child. However, at the same time she defined the possibility of having a ‘child of her own’ in terms of the act of carrying the child, rather than in terms of passing on genes. Equally, Tilda’s remark about the views of a future partner indicates that she was aware that this view might not be shared by others.
This concern was raised in many of the interviews when the interviewees envisaged future relationships or talked about how they had disclosed their infertility to their present partner (see also Guntram and Zeiler, 2016). Annie described that a partner ended their relationship because he had found her infertility hard and Tess underscored that although she does not consider alternative routes to parenthood ‘unnatural’, others do. Astrid also explained that her partner might find it difficult to be deprived of genetic children.
I don’t feel that I need to … spread my genes. Or I don’t feel that right now, at least. But for his sake, for my partner’s sake … It can get difficult, for that person.
These accounts demonstrate that the interviewees renegotiated the meaning of having a ‘child of one’s own’ by according significance to gestation over genetics. At the same time, they highlight that the interviewees were aware of the possibility that renegotiation of this type could challenge dominant discourses about kinship that others might take for granted.
Furtermore, when the experience of embodied pregnancy was described as facilitating certain bonds between the mother and the child, as enabling certain types of interaction, and as strengthening intimate relationships, the interviewees’ accounts could be interpreted as simply reinforcing prevailing ideas about the constitution of nuclear families and heterosexual relationships. Similarly, descriptions of how infertility had disrupted their life trajectories could be seen to build on norms that stipulate what female embodiment and womanhood ‘should’ involve (see also Earle and Letherby, 2007; Letherby, 2002a, 2002b). And, their emphasis on the relationality and connectedness supposedly enabled by pregnant embodiment could be said to draw on, and help reinforce, norms that stipulate the significance of maternal-foetal bonds and gestational motherhood.
However, embracing the idea that restrictive norms are concurrently reinforced and questioned in the context of infertility and assisted reproduction (Thompson, 2001), I suggest that an alternative reading is possible. The interviewees’ emphasis on relationality and connectedness in their understanding of pregnancy could, at the same time, be seen to demonstrate how notions of relatedness can be renegotiated. To ‘do’ relatedness (Thompson, 2001) in this way seems to involve neither a simple pragmatic negotiation of the importance of genetics on the basis of reproductive potential (Becker, 2000; Van den Akker, 2000) nor framing the womb as the only element that enables closeness (cf. Pashigian, 2009: 44). On the contrary, the interviewees construed pregnant embodiment as a process in which relatedness and connectedness is ‘made’, involving the pregnant women and the children-to-be, as well as those with whom they interact.
The preferred solution
Given the above-noted desire to experience pregnancy, how did the interviewees describe ‘solutions’ to their infertility?
When discussing the future, some interviewees suggested the possibility that their desire to experience pregnancy would decrease. Others occasionally highlighted the benefits of infertility, for example, in terms of not having ‘to be fat for nine months’ (see Guntram, 2013). In such accounts, the interviewees could be seen to circumvent the future impact of infertility, in the first instance, by focussing on changed preferences and, in the second, by emphasising the down sides of the desired state. The interviewees also described ‘solutions’ that would not result in them becoming pregnant. For example, some women suggested the option of meeting a partner who already has children, or becoming a foster parent, and some of the women with uterine and vaginal agenesis talked about gestational surrogacy. In both groups, the majority of the interviewees also described adoption in positive terms.
However, it was even more common for them to remain hopeful by constructing plots in which their desire to experience pregnancy was satisfied. This pattern was apparent across the two groups. Of the interviewees with uterine and vaginal agenesis, Angelica, Andrea, Amelia, Astrid, Agnes, Amanda and Alice all explicitly stated that they would like a uterus transplant, and each of them presented this as an assumed future possibility to a different extent. Angelica illustrated this assumption when she described what usually happened when she was feeling depressed:
Sometimes you get really absorbed and google ‘uterus transplant’, and look into it, and then sometimes you research adoption sites and that process. So there are options. You know that, since uterus transplants are not possible, yet.
Astrid and Andrea also highlighted this future possibility, Astrid by saying that research is developing fast and Andrea by suggesting that, if everything turns out as she would like, research will develop a way to transplant or create an artificial uterus in the next 10 years. Hence, by referring to rapid developments in medical innovation and by putting their trust in the success of assisted reproductive technology, these interviewees envisaged a future in which their infertility could be managed.
The interviewees with Turner Syndrome typically centred on egg donation when they spoke about how to manage their infertility in the future, though they framed it not as a future innovation but as an accessible option in the present. Thelma, for example, said that she always had known that egg donation would be ‘required’ and that it was her ‘only chance to get pregnant’. Some of the older women remarked, however, that egg donation had not been an option when they were growing up. Tara, for instance, highlighted the fact that the legalisation permitting egg donation in 2003 ‘was a great opportunity for us Turner women’. ‘I was really happy’, she said, since
[t]hen you really knew that the future might have something to offer anyway! And that felt really nice, actually. Although it felt a bit far away, it was a relief to know that ‘Now the possibility exists’.
Nor had egg donation been an option when Tanja, at the age of 13, found out that she would not be able to become pregnant. She explained, however, that by the time she had begun to consider having children it had become a ‘reality’ in Sweden. These examples all highlight temporal specificity in these women’s accounts. Since their infertility had been disclosed to them at a stage in life when pregnancy and children were seen as concerns for some future time (cf. Zegers-Hochschild et al., 2009), medical ‘solutions’ and medical innovations served to mitigate the disruptive force of infertility in their plots for the future, even if these solutions were not accessible in the present.
To justify their preference for assisted reproduction, the interviewees often contrasted it with adoption. They specifically emphasised the stress involved in the Swedish adoption process in terms of it being time consuming and expensive, and because of the extensive examinations of the applicant’s home and family relations. Amelia said that her situation felt a little unfair, since
[a]dopting involves such a lot of hassle and a lot of paper work. And I think it is very tough before you get a decision, and it is a very lengthy process.
They also remarked that adoption regulations had become stricter, and how this affected them as a group. Tracy, for example, said,
Adoption is a long process, really, and very strict regulations have been introduced now, since 2007, which means that it is very hard to adopt if you have Turner. It is especially difficult if you have a heart condition; even if you’re considered healthy by your doctor, a range of countries will say no. So this means that IVF [with egg donation] might almost be easier.
Adoption is described as a long, strict, trying process that can be difficult to pass. This emphasis of the hardships of the adoption process in comparison with that of egg donation highlights also the specificities of the Swedish context in which egg donation is covered by public health insurance to a large extent, while adoption costs are not equally compensated.
However, when Tracy noted that egg donation ‘might almost be easier’, she did indeed indicate that there could also be difficulties associated with egg donation, though she did not specify what these difficulties involved. Likewise, none of the other interviewees touched on hardships of assisted reproduction to any great extent, for example, in terms of it often being a long, tiring and emotionally stressful process, perhaps also involving economic difficulties (see, for example, Franklin, 1997; Peters et al., 2007; Whiteford and Gonzalez, 1995). On a few occasions, it was mentioned that risks had to be considered before undergoing medical interventions, and some interviewees touched on the increased risks involved in pregnancy because of their condition. Others mentioned that there were no guarantees that egg donation would succeed. However, these reflections were not developed further.
When the interviewees contrasted adoption with assisted reproduction, the temporal dimensions of medical ‘solutions’ were also spelled out. Theodora, for example, said that adoption is fine, yet still emphasised that she would miss certain aspects:
It’s okay to adopt, it’s really nothing … it’s not … But still, not to feel what it is like to be pregnant, the delivery, and to have this small child. It’s been something that I would like to experience myself. Because when you adopt you won’t carry the child, and you won’t deliver it, and you won’t have it as an infant, but then there will be an older child.
Andrea, for example, focussed even more explicitly on the aspect of time when she explained why she, at least in the beginning, would not consider adoption:
You know, I’ve always said that I’d want my baby from the beginning, you know. […] ‘I’m going to have my baby’, it should be … I’m going to have it in the hospital.
The significance accorded here to having a ‘small’ child and having a child from the ‘beginning’, seems to be closely linked to how the women position pregnancy as a process in which relatedness and connectedness is ‘made’. Because it does not provide early access to a child, the reasoning goes, adoption would not facilitate the same kind of relatedness and connectedness that pregnancy was considered to bring. This way of reasoning need also to be read in light of national adoption being very rare in Sweden, which means that infants seldom are adopted and that adoption often involves lengthy processes and extensive travels. Again, medical solutions were framed as the preferred solution, and adoption was positioned as second best. To borrow from Thompson (2005: 8), the women giving these accounts could be seen to choreograph their future to correspond to their desire for pregnancy, in such a way that their descriptions of potential medical ‘solutions’ could serve to bridge the gap between ‘what is’ and ‘what might be’ (Taussig et al., 2013: 5).
Viewing infertility, assisted reproduction and kinship through the lens of the interviewees’ accounts: concluding discussion
Previous research has shown that the use of assisted reproductive technologies can be viewed as the ‘obvious’ choice and as simply motivated by the wish for a child (Van Balen et al., 1997). It has also been suggested that the preference for such technologies is based on certain beliefs about adoption, such as the view that it does not provide a ‘child of your own’ (Brakman and Scholz, 2006) or that it involves the risk of having a ‘problematic’ child (Van Balen et al., 1997).
In addressing how desires, kinship and ‘solutions’ to infertility are construed by women with an ‘atypical’ sex development, the above analysis likewise demonstrates how the preference for assisted reproduction is demarcated by the women as they contrast medical solutions with adoption, in light of the specificities of the Swedish context. However, the above analysis has shown how these contrasts specifically were used to emphasise temporal dimensions of adoption in relation to the interviewees’ desire to experience pregnancy. The hesitation the interviewees expressed towards adoption could thus be understood as concern about its failure to provide the relations and interaction with others, or the bonds with the child-to-be, which the interviewees considered would be possible with pregnancy.
This desire – which recurred in accounts across the data – could, I suggest, be conceptualised as a desire for ‘corporeal connectedness’ rather than genetic linkage (cf. Becker, 2000; Van den Akker, 2000), and specifically for the corporeal and relational process associated with pregnancy. This conceptualisation contributes to refine understandings of how kinship can be negotiated in light of one’s infertility as it demonstrates how corporeal dimensions of kinship and relatedness other than genetic ones are assigned meaning. As such, it also details an alternative venue for how biological kinship can be ‘done’ without giving precedence to genetics (cf. Edwards et al., 1993; Franklin and McKinnon, 2001; Strathern, 1992).
Furthermore, this article has explored accounts by women who found out about their infertility in their teens by learning they had ‘atypical’ sex development. As there is little research on infertility detected in adolescence, this article makes a unique contribution to social scientific and feminist studies on infertility and assisted reproduction. In particular, the specificity of the material highlights how the clinical definition of infertility (‘the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse’; Zegers-Hochschild et al., 2009: 2686) excludes certain experiences of infertility. When the interviewees found out about their condition and consequent infertility, none of them had tried to ‘achieve a clinical pregnancy’. Most of them had not even had sexual relations, let alone been involved in an intimate relationship. Specifically, this finding highlights the need not only to scrutinise the interconnection of biological ‘facts’ and social understandings involved in medical and other conceptualisations of infertility (Letherby, 2002a; Sandelowski, 1990), but also to problematise such conceptualisations in terms of the moment in the woman’s life when infertility is disclosed, as well as the embodied and relational experiences of the subjects.
By viewing infertility through the lens of these women’s accounts, we are thus made aware of the importance of considering how medical categorisations fail to take account of certain life trajectories. Such failures may contribute to marginalise certain individuals and to perpetuate certain beliefs about infertile individuals, which in turn can affect the organisation and provision of treatment. In light of recent reports that World Health Organization (WHO) is considering to revise their definition of infertility (see WHO, 2016), these findings are particularly pertinent. By pointing to exclusions resulting from the existing definition of infertility, it becomes possible to underscore the importance of critically examining how demarcations and exclusions enacted through definitions of infertility may obscure also other infertility experiences and consequently limit affected individuals’ access to support and treatment.
In addition, the fact that the interviewees found out about their infertility long before they began to consider becoming pregnant illustrates a temporal dimension to the women’s ability to make sense of what is happening to them in the present and what might happen to them in the future (Kirkman, 2003). Others, such as Earle and Letherby (2007), have shown that time is integral to women’s experiences of conception, whether they conceive or not, and have highlighted the interplay between different conceptualisations of time in women’s accounts of conception. The present analysis, on the other hand, illustrates how the moment in life when infertility was disclosed interacts with opportunities to construct plots about the future and envisage possible solutions. Indeed, when teenagers learn they are infertile, they can experience acute grief (Zeiler and Guntram, 2014). At the same time, the above analysis has demonstrated how early disclosure of infertility provided opportunities for affected women to ‘make use’ of medical ‘solutions’ in mitigating the disruptive force of their infertility, even if they had no access to these solutions at the time, as was the case for the women with uterine and vaginal agenesis.
Finally, in examining how desires, kinship and ‘solutions’ are construed, and how the interviewees’ understanding of pregnancy and kinship is negotiated in accounts of their infertility, this article does not seek to reduce women to wombs (see also Pashigian, 2009), to reiterate notions of pregnancy as the only constituent of a maternal-foetal bond or to see it as a central core of female embodiment and womanhood. Instead, the analysis opens up new perspectives on medical definitions of infertility, and by illustrating a desire for pregnancy it details how a preference for assisted reproduction can be interpreted as more than simply desperation for a child or passing on genes. In this way, the article contributes to a more positive feminist discourse on infertility, as it shows how women who cannot have children and ‘pursue motherhood through medical and technological means’ (Ulrich and Weatherall, 2000: 325) need not be considered simply as being ‘duped’ by medical interventions (cf. Davis, 1995). When viewing the examined accounts in the light of a desire for corporeal connectedness, they demonstrate how affected individuals can ‘make active use’ of assisted reproductive technologies to mitigate uncertainty in making sense of their condition, keep hope alive and renegotiate dominant norms of kinship.
Footnotes
Acknowledgements
I would like to express my deepest gratitude to my interviewees and the doctors, bloggers and patient organisations who helped me recruit the interviewees. I would also like to thank the Department of Thematic Studies, Linköping University, for supporting my work with this article.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
