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Childfreeness, parenthood and adulthood

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Kristina Engwall

Institute for Futures Studies, Box 591, Stockholm SE-10131, Sweden, SE
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Abstract

This article discusses voluntary childlessness and reaching adulthood in Sweden, focusing on childfree women and men with intellectual disabilities (IDs). The article is based on interviews with 19 childfree individuals, four of whom had IDs. It focuses on motives for voluntary childlessness, with three types of motives being mentioned only by the interviewees with IDs; namely the difficulties of parenthood and of building relations with children, the risk of heredity and the maliciousness of children. The interviews have been analysed with relevance to power axes of gender, age and abilities, and these three motives may be seen as results of the interviewees' ascribed position as intellectually disabled and of the segregation in society between able and disabled individuals. The article also includes a discussion about how to achieve ‘adult status’ when parenthood is ruled out. Other issues in everyday life seem more important than parenthood, according to the individuals with IDs.
How to Cite: Engwall, K., 2014. Childfreeness, parenthood and adulthood. Scandinavian Journal of Disability Research, 16(4), pp.333–347. DOI: http://doi.org/10.1080/15017419.2013.781955
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  Published on 04 May 2014
 Accepted on 3 Jan 2013            Submitted on 1 Mar 2012

Parenthood is often seen as a self-evident step towards adult life. In Sweden, as in many other Western countries, it is regarded as a way of growing up and reaching adult status. Accordingly, the decision to enter parenthood is viewed as ‘natural’ and ‘normal’ (Veevers 1975; Dykstra and Hagestad 2007). It follows that choosing childfreeness1 contradicts common perceptions of ‘normality’, ‘meaning of life’ and ‘adulthood’ (Peterson 2011). However, there are many expectations and stipulations concerning who should be a parent. For example, in Sweden, parents should not be too young or too old, they should not have more children than they can support, etc. Some categories of people are even discouraged from having children, among them, women and men with intellectual disabilities (IDs).

Consequently, there are contradictory messages within Swedish society today: the majority of people are encouraged, and even expected, to become parents, while a minority are urged to remain childless, which is motivated by the best interests of the child as well as the society (Engwall and Peterson 2011). These conflicting tendencies are discernible in interviews with voluntarily childless women and men in Sweden today. An illustrative example is the completely different reactions concerning sterilization which two interviewees in this study described. One man without an ID had decided to have a vasectomy and had not told anybody except his fiancée about it. He said,

No. I haven't mentioned it to anyone because I think, no … it's very definite and so on. I don't really know. You get called in question. It's like, “Why did you do it?”, “You're going to regret it,” and so on … and many things like that. (man 2)

The other interviewee, who had undergone sterilization, was a woman with an ID. She told a different story:

Yes we, me and my Mum, went to the gynaecologist and we talked to somebody and Mum said, “It was really brave of you to decide to do this [the sterilization]”. (woman 11)

These different responses raise questions about underlying societal perceptions of who should be a parent. This article is based on 19 Swedish women's and men's stories about their childfreeness. Four of these interviewees were classed as having IDs.

The aim is to discuss childfreeness, parenthood and adulthood within a Swedish societal context. I define voluntary childlessness as a social practice within a cultural, political and temporal context; therefore I search for the structural frames influencing the childfree lives. The article takes its theoretical starting point in intersectionality, where the interplay between different power relations such as gender, age and intellectual ability is studied. I empirically explore the motives of childfreeness and the claims that childfree individuals make about achieving adult status, and consider how perceptions of gender, age and disabilities permeate the interviewees' stories.

Historical background on parenthood for disabled individuals in Sweden

The idea that individuals with IDs are not fit to be parents has a long history. There is a historical transition from institutional denial of parenthood to more subtle ways of expressing the same message (Sherry 2004).

In Sweden, at the beginning of the twentieth century, the perils of allowing ‘feebleminded’ women and men to become parents became the focus of much attention, based on arguments for eugenics. ‘Feeblemindedness’ was a gendered concept where women's sexuality was in focus, whereas men were connected with criminality (Engwall 2000). This argumentation resulted in sterilization laws, and among the victims of sterilization, 93% were women (Tydén 2002). Being institutionalized was another way of controlling fertility since once inside institutions, women and men could be separated (Jönsson 2000). Likewise, a prohibition against marriage was seen as a way of preventing ‘feebleminded’ individuals from becoming parents (Engwall 2000).

During the 1960s, the views on people with IDs started to change. The medical discourse had to make way for a more pedagogical one (Söder 1981). New influences such as the so-called ‘normalization principle’ also affected the care. The rights of people with IDs to a ‘normal’ life (as opposed to an institutionalized life) were underlined (Nirje 2003). During the 1970s, some of the special laws aimed at persons with IDs were annulled, such as the sterilization law and the law that prohibited them from marriage. The changes also concerned views on sexuality and disabilities. There were discussions about the rights of men and women with IDs to have sexual relations, but the reluctance to allow women and men with IDs to become parents still prevailed (Areschough 2005).

Attitudes towards individuals with IDs and parenthood in Sweden follow an international trend where ‘barriers to participation in the parenting role’ still persist and objections to parenting among people with IDs include arguments such as pregnancies viewed as mistakes, pressure to have an abortion, and the risk to the parents of losing custody of their child (IASSID 2008). Despite more open attitudes towards sexuality among people with IDs, the discourse of the last few decades has shown a perception of parenthood as unsuitable, problematic and not achievable for this part of the population (Mayes, Llewellyn, and MacConnell 2006; Malacrida 2009; Llewellyn et al. 2010).

Today, research tries to discern the social barriers and restrictions which affect individuals' with IDs abilities to parent (Llewellyn et al. 2010; Starke 2011). Research has so far been more occupied with parents with IDs and the societal resistance towards them than with women and men with IDs who choose not to become parents. However, Karin Barron (2002) has interviewed some Swedish women with IDs who explained their childfreeness in terms of the importance of freedom and how they did not want more assistance in their lives, which would be necessary if they had children. Showing different life choices among people with IDs and elucidating the heterogeneity within this category of people is important (c.f. Mayes, Llewellyn, and MacConnell 2006; Barron 2010), and therefore childfreeness among individuals with IDs deserves attention.

Theoretical approach

Research on childfreeness has been rare in a Nordic setting (exceptions are Fjell 2008; Engwall and Peterson 2010). Most research with a focus on childfree women, is from English-speaking countries where motherhood and a professional career are hard to reconcile (Veevers 1975; Houseknecht 1987). In contrast to these countries, the Nordic countries have tried to facilitate reconciliation between parenthood and work. Swedish politics involves providing public child day-care, paid parental leave, compensation for staying home with unwell children, etc. (Engwall and Peterson 2011). Such politics, which help individuals to become parents, are based in part on the national interest of encouraging births of children in order to secure a future generation of tax payers, workers, etc. More nationalist motives such as fear of decreasing or increasing certain ethnic groups may also play a part in pro-natalist politics (Gal and Kligman 2000). Thus, questions of who should be a parent, which children are seen as valuable, and citizens' contributions to society are closely connected to issues concerning gender, ethnicity and, not least, disabilities (Gal and Kligman 2000; Douglass et al. 2005; Lister 2006).

Previous research on voluntary childlessness has shown the impacts of gender, heteronormativity and age. Women are usually expected to become mothers since children are often seen as necessary to complete a woman's life, and therefore voluntarily childless women tend to be seen as unfulfilled (Morell 2000; Meyers 2001). Furthermore, voluntarily childless women are often depicted as deviant, selfish, immature and unfeminine (Bartlett 1994; Gillespie 2000). Men, on the other hand, live under different conditions. Masculinity may be attained through fatherhood, but also through other life areas, such as work, male bonding, and so on (Berglund 2007). Parenthood is also strongly associated with heteronormativity, and the pressure for parenthood is stronger among young heterosexual couples than among single people or same-sex couples (Fjell 2008). Age is another important aspect of being pressured to have children. Younger women (who are still believed to be fertile) experience more questioning and demands compared with older women (Fjell 2008; Engwall 2010a). Men, who can become fathers for most of their life, are put under far less pressure (Engwall 2010b).

Accordingly, research on voluntary childlessness has mainly focused either on gender, age, or on another dimension. The fact that a childfree individual experiences the interplay between gender, age, and ethnicity, etc. has not been central. This theory of how these different power relations interact and affect life conditions simultaneously is called intersectionality and is based on the presumption that an individual's position on various power axes (e.g. gender, ethnicity, disability) is given different status in diverse situations. Intersectionality thereby attempts to explore how different social power relations are mutually intertwined and co-constituted (Grönvik and Söder 2008). Not only are the intersections intertwined and exposed to constant changes, it is also necessary to see that the content and meaning attributed to these power axes are never static, but constantly re-defined and re-constructed (Lykke 2005; Meekosha 2006).

Söder (2009) argues that intersectionality departs from two, partly overlapping, perspectives. The first one is structural, focusing on how positions on different power axes stratify society. The other one aims at the construction of individual identity when handling the intersection of different power relations. In this study, I pay attention to how gender, age and disability intertwine and intersect, and how they relate to patterns of dominance and subordination (Meekosha 2006). My intention is to analyse how axes of power structure society, and how this matrix of power relations influences the situation of childfree women and men with IDs. Meekosha (2006) argues that gender, race, class and disability are powerful markers of identity, but also ‘inextricable aspects of the foundations of societies and nation states’ (172).

In order to be able to focus on the power axes mentioned above – gender, age and intellectual ability – I will use categorizations in my description and my analysis. This is problematic since categories are often based on dichotomies (e.g. woman–man, old–young, disabled–able) and reflect problems with handling a multi-faceted reality. Moreover, categorizing often involves creating a hierarchical relationship between the two components. Despite my reluctance, I will use dichotomies and categories as a way of working with my empirical material (McCall 2005). My aim is to overcome simplified categories and narrow descriptive categories and go beyond them to analyse how they intertwine and interact (Lykke 2005).

Empirical material and methodological considerations

The study method is qualitative in nature and based on semi-structured interviews with 19 childfree Swedish women and men who defined themselves as voluntarily childless.2 Participants were selected via personal contacts and snowball sampling method. My point of departure is that I respect my interviewees' stories and their motives for being childfree (c.f. Park 2005).

The interviewees consisted of 11 women, among whom six were in their 30s or early 40s, one was in her 50s and four were in their 60s. All had been or were in heterosexual relationships. Two women had IDs. I also interviewed eight men. Five of them were in their 40s, one was in his early 50s, and two were in their 60s. All men, except for one who was in a homosexual relationship, were in heterosexual relationships. Two men had IDs.

Since this article focuses on women and men with IDs and their experiences of voluntary childlessness, I will describe the two women and two men with IDs in more detail. The women were in their 40s and the men in their 60s. One woman and one man were co-habiting with each other. The other two had heterosexual partners but were not co-habiting with them. They all had some community-based assistance in their homes. Three had jobs outside the ordinary labour market and one, a man, had recently retired from a sheltered workshop.

The women and the men with IDs belonged to two different generations and some differences in their experiences can be explained by the different historical settings in which they had grown up. One of the men had experience of foster care homes and institutions, which were more frequent during the 1950s and 1960s. The other man had grown up with his parents. As a grown-up he had lived with his father and he had been employed in the ordinary labour market until his father died. At that point he needed more support and was transferred to the sheltered market and a group home.

The two women belonged to the ‘integration generation’, i.e. they were raised in their biological families and had good awareness and access to disability support (Gustavsson 1998). The women fit Ringsby Jansson and Olsson's description (2006) of young people with IDs called ‘the cared for and represented’. They had strong advocates in their parents and were living active lives structured around different activities arranged exclusively for individuals with IDs.

Before the interviews were conducted, the interviewees were informed by letter of the aims of the study. At the beginning of the interview, we discussed the meaning of voluntary participation and their right to withdraw at any time. For those who I contacted through a personal connection, we discussed the fact that somebody else knew that they were going to participate in this study (c.f. Barron 2002). In this article, personal information and any other information that can be linked to the interviewees have been omitted or changed.

The interviewees were encouraged to talk about specific themes, such as their motives for being childfree, reactions from other people, their relations with partners, friends and working colleagues, as well as topics such as the place of children in society, contraceptives, and the importance of parenthood for the identity of a man or a woman. All interviews were recorded and transcribed verbatim.

Each interview followed the same concept, regardless of the interviewee's intellectual ability. Differences between interviewees with IDs and those without concerned two aspects: firstly, the interviews were a little shorter with the former group; secondly, it struck me that interviewees with IDs lacked words and concepts concerning sexuality. This became obvious when discussing contraceptives and how to become a parent. It was also commented upon by one of the men (man 7) who said that sexuality was never an educational topic at school, and by a woman (woman 11) who mentioned an up-coming course on ‘women discussions’.

In the analysis of the interviews I searched for differences as well as similarities. An important analytical starting point is that the societal context is mirrored in the narratives. Voluntary childlessness is a social practice characterized by a varying temporal and spatial context. The narratives of the interviewees must therefore be put in a specific social and cultural context. I attempt to go beyond the individual descriptions in order to find the structural frames that influence the childfree lives. Above all, I search for the structures separating disabled from able childfree individuals.

Each interview and each story is unique. Qualitative studies like this one, based on a small number of interviewees who are not selected from a representative selection, do not claim to make generalizations. The benefit is to obtain knowledge about individuals' experienced possibilities of choices and actions in a society which to some extent is characterized by common values and standards (Thor 2003). Qualitative interviews also give access to the interviewees' own choices of words and nuances. She or he gets the opportunity to recount the life story in her/his own terms.

The following presentation of the empirical data is structured into two parts. The first part introduces the three motives of childfreeness that were mentioned only by the interviewees with IDs. The second part discusses how to reach adult status when parenthood is ruled out. The second part also analyses the empirical material further, and how aspects such as gender, age and disability are intertwined in perceptions on childfreeness.

Motives for childfreeness

Research into voluntary childlessness has often been occupied by questioning why women and men choose childfreeness. Several attempts have been made to classify the different reasons and explanations (Park 2005; Peterson 2010). International research has often described the career as a motive for not having children, especially in able women (Park 2005). In Sweden, the career or working life is seldom mentioned as an argument for childfreeness (c.f. Wager 2000; Fjell 2008). Instead, the absence of longing for a child or the lack of ‘baby fever’ is a common argument. Children deserve to be wanted and longed for, and consequently the absence of these feelings implies a childfree life. Both childfree men and women refer to missing biological urges (Peterson and Engwall 2010).

However, the overarching discussion on ‘the lack of baby fever’ was absent from the interviews with the women and men with IDs. An overall impression was that all interviewees, regardless of intellectual ability, had problems with defining motives for not having children since they perceived their childfreeness as natural. Nobody gave one specific reason for not having children; people discussed several contributory causes for their decision. The women and men with IDs all said, ‘I don't want children’ but during the interview, more arguments emerged which explained and qualified their decision.

I have chosen to focus on the arguments for childfreeness given only by the interviewees with IDs, since these motives relate to their experiences of their everyday lives. Above all, three arguments emerged that deviate from my interviews with the childfree women and men without IDs: the difficulties of parenthood and of building relations with children, the risk of heredity, and the maliciousness of children.

The difficulties of parenthood and of building relations with children

The hard work and time-consuming engagement in raising children is a well-known reason for being childfree (Bartlett 1994; Park 2005). Research has shown how childfree individuals seem to emphasize the troubles and hardships of being a parent, such as less time for oneself, interruptions in one's professional career, and poorer finances (Marshall 1993). The interviewees with IDs concurred with the arguments outlining difficulties of parenthood but gave more concrete examples. One woman (10) said, ‘… it's difficult to take care of them [the children] when you work’. Another woman compared her life to that of her siblings who had children: ‘But I have a good life as it is. I don't have to be punctual and things like that. I know that they [parents] have very much to do’ (woman 11). One of the men explained:

It's a lot of responsibility as well, you can't let them out of your sight, otherwise they run away … go off. You have to watch them so they don't hurt themselves because they easily get hold of things that are dangerous. There are things you use to clean the floor and things like that … (man 8)

The interviewees' examples included difficulties finding babysitters in emergencies and keeping an eye on children to prevent them climbing onto stoves or swallowing detergent. The interviewees described everyday life with children using practical examples.

The childfree interviewees without IDs all had different kinds of relations with children, and their feelings towards children ranged from disliking to loving them. Some had close relations with children, while others hardly had any contact with them. In the context of relations with children, many mentioned occasions when they met, or had met, children on a voluntary basis, or occasions when they were present when children were being discussed, such as coffee breaks, lunches, parties, etc. They also mentioned experiences of babysitting and child minding. Some women had had baby brothers or sisters in their teenage years and had had to help with looking after them. Others had lived with partners with children.

Among the individuals with IDs there were also variations in the interviewees' relations with children. One of the men with IDs did not like children. He said that he did not have enough patience to handle them and this had been a reason for him not to have children (man 7). A woman with IDs (11) who worked in an integrated workplace related that sometimes the discussions about children at the lunch table at work bored her. She said:

Sometimes when you sit there, they talk all the time: they [their children] have some problems, somebody is ill and another one is difficult. Do I have to listen to all that? Problems, all the time!

Asked to describe her strategy for dealing with these kinds of conversations she replied, ‘I shut up. I don't say very much and I read the paper instead, or talk to somebody else …’. Her strategy, to be quiet or leave, was the same as that of many other childfree women and men when conversations revolved around children (Engwall 2010a).

Still, it is striking how rarely the women and men were exposed to children or talk about children. One of the four interviewees with IDs had close contact with children because her siblings had children, but she had never babysat them. She explained that she did not know how to talk to young children and that she felt a bit uncomfortable with them (woman 11). The two men (7 and 8) recalled the few occasions in their lives when they had taken care of children. In both cases they had read fairy tales to older children. The woman (10) who worked in a segregated work place said that she and her workmates never discussed children. When I asked her for the reason she said that it was something you discussed in your leisure time.

Previous research has shown that a very low percentage of people with IDs are parents, which restricts the number of friends with IDs who have children and if they are parents their children are often taken care of by social services in foster homes (Booth 2003; Starke 2011). These experiences are shared by the interviewees in this study. A man with IDs (7) says, ‘I was about to say that I don't know anyone who has children’.

Compared with the other interviewees, the interviewees with IDs mentioned few relationships or encounters with children. They were not surrounded by children or discussions of children, they did not meet many children, and they did not go babysitting.

The risk of heredity

Another reason for childfreeness among the interviewees with IDs was the risk of passing on diseases. The risk of ‘feeblemindedness’ passed on to the next generation had a great impact on the eugenic arguments of the last century. Today, the discussion on heredity and disabilities is still alive because of the possibility of identifying disease genes and how they are passed on from generation to generation (Shakespeare 2006).

The subject of the heredity of diseases and disorders was also mentioned in some interviews with individuals without IDs concerning severe allergy (man 5) and epilepsy (woman 8). However, they did not see the risk of heredity as a strong reason for not having children.

The interviewees with IDs took a different standpoint on this issue. One of the women had epilepsy, and the risk of convulsions was her main argument for not having children (woman 10). The other woman with IDs (woman 11) said:

-I felt that … she or he might have a handicap. I have such thyroid gla … I don't know the name … .

Kristina: The baby should have the same?

-Yes, I get convulsions sometimes.

We also touched upon the question of IDs and genetics. One woman was asked if she also saw her IDs as a hereditary risk. She answered, ‘I don't know, you can't know that in advance’ (woman 11). Another man with IDs raised the issue of heredity, or rather the absence of heredity, saying that an important reason for him not to become a father was the risk of having a child who would become cleverer than him (man 7), ‘Then comes that day when they pass me. I don't know if I'll be able to handle that’.

Even though the experience of having hereditary diseases was shared by individuals with and without IDs, they came to different conclusions as to how to deal with this fact. For those with IDs, one main reason for remaining childfree was the risk of passing on the condition, while those without IDs saw the risk of heredity of disease as a minor motive for their childfreeness. Besides, they were encouraged by professionals and friends to become parents since they had knowledge about living with these diseases.

The maliciousness of children

The third motive for not having children concerned maliciousness of children and was given by a man with IDs (man 7). He had been teased by children both as a child and as a grown-up, and he stated that children are not always good or friendly, and that this was one of his reasons for not having children. He says: ‘… children don't have these kinds of restrains so they can be quite cruel. Even if they don't mean it they can be cruel …’ One of the women with IDs (11) also mentioned being harassed by children as a grown-up but she did not connect this experience with her childfreeness.

The maliciousness of children as an argument was also mentioned in the life story of Janice Slattery in the book Finding a Place in the World (Traustadóttir and Johnson 2000) as a reason for not having a child. She writes, ‘And we came to the decision that we didn't want to put our child at risk of being teased at school like I was’ (p. 100). Her reasons for not having a child are based partly on the mockery of other children, and partly on the risk of passing on Down's syndrome.

Usually, children symbolize goodness and innocence. Sometimes, however, children are seen as the opposite. In mass media research, children are seen as either victims and vulnerable, or as perpetrators and threatening (Buckingham 2000). In contrast to adults, who are characterized by culture, children have often been seen as natural. Yet the absence of culture may also imply a lack of manners, which may be seen as maliciousness in children (Halldén 2011).

All different feelings towards children have been mentioned in the interviews—from love to dislike—but the interviewees without IDs never mention discomfort caused by children's mockery.

Reflections on the reasons given for not having children

Most of the reasons for not having children were shared by several of the interviewees. These included a fear of being tied down by the responsibility for children, a dislike of, or non-interest in children, and simply not wanting children. There were also other reasons that were only mentioned by the interviewees with IDs. Above all, for the individuals with IDs in this study there was a lack of confidence in parental abilities and an absence of children in their everyday lives.

Child researchers today argue that children and adults live in separate worlds (Qvortrup 2000). Children have been segregated physically from adults and have been directed to special places and they spend their time in separate environments. When it comes to the interviewees with IDs, the separation from children seemed to be even more real: they had very little contact with children, they rarely babysat or child-minded, and they were rarely exposed to conversations about children, partly due to segregation in housing, workplaces and leisure activities.

Little faith in being a good parent also distinguished the interviewees with IDs from those without. Even though some of the interviewees without IDs had little experience of taking care of children they were all confident that they could have been good parents if they had wanted to. Some related how friends kept telling them that they would have made great parents (Engwall 2010a). This kind of encouragement was not the experience of individuals with IDs. Their way of not considering parenthood may be seen in the light of a societal discourse where they are discouraged from becoming parents. Karin Barron (2002) concludes that people with IDs are often told how difficult parenthood is and that such a message is easily internalized. This is in agreement with an Icelandic study showing that women with IDs know about the difficulties of parenthood, both because of their impairment and because of their low societal status, which contributes to their decision not to have children (Björnsdóttir and Traustadóttir 2010). Kittelsaa (2008) poses the question of whether young adults with IDs have internalized society's childfree picture of them and whether not spending time with other, same-aged persons, results in different frames of reality. The individuals' with IDs decision on childfreeness is therefore taken in a very different societal context compared to women and men without IDs.

Parenthood and the status of being grown-up

Becoming a parent is often seen as a way of becoming an adult. A common notion is that taking care of a child makes you let go of your self-absorption and instead devote yourself to the child's needs (Bergnéhr 2009). Childfree individuals without IDs are well aware that parenthood is seen as an important part of adulthood, and therefore mentioned other tokens of being grown-up and being responsible citizens. These include social duties such as paying taxes, taking care of other children, or carrying out voluntary work (Engwall and Peterson 2011).

The idea of ‘using’ parenthood as a way of becoming an adult was mentioned in this study by a man with IDs (man 7). In fact, he spoke of an experience of parenthood being used as a way of trying to escape being labelled intellectually disabled. He was very upset that one of his friends had become a father in order to attain ‘normality’ and was troubled that he claimed that the status of parenthood reduced his impairments; that becoming a father made him normal and not intellectually disabled anymore. He said:

Then I think that this category that I belong to [individuals with IDs] … that is what I think is so sad really. I wish you could do something about it because I believe that, well I can't say the majority, but I think that many of my friends who have children …, in my experience, [have children] because they think they will be like everyone else. (Man 7)

He had repeatedly had this argument with his friend, who was a father. The worst thing about this belief in transforming from being disabled to being able, he said, was that it also stopped many from asking for assistance, since normal parents are not supposed to be in need of support (man 7). Parenthood, then, became a way of striving for normality, according to this interviewee. In a way, he used the same strategy as described in previous research, called ‘condemnation of the condemners’ or ‘rejection of the rejectors' (Veevers 1975, 480). He questioned others’ motives for parenthood in the same way as parents disbelieve the reasons for childfreeness. The difference in this case is that he was a man labelled as having IDs, and therefore was not being encouraged to become a parent.

Nevertheless, the issue of being perceived as adult appear as very important to individuals with IDs also. They often struggle to be accepted as grown-ups in situations where others are naturally accepted as adults. The interviewees gave concrete examples of incidents where their grown-up status was challenged. One man told me with indignation about an incident when he was treated like a child and told to go home early from a restaurant (man 7). A woman told about the resistance she had encountered when she wanted to move in with her fiancé. She argued, ‘But I am a grown-up and I want to decide for myself’ (woman 10). She underlined her statement by clapping her hands to each syllable and this was the only occasion during the interview when she used such emphasis. The other woman said several times during the interview that she felt like an ‘ordinary human being’ and therefore had the same rights as anybody.

Yet parenthood does not seem to be part of this struggle. None of the four individuals with IDs interviewed in this study seemed to be very concerned with the issue of entering parenthood as a way of gaining adult status. Other issues seemed more central to individuals with IDs in terms of being perceived as adults. Still, the importance of being accepted as adult was a recurrent theme. The significance of being seen as adult must be seen in the historical light of being treated as ‘the eternal child’, a view which was institutionalized until 1989 in Sweden when the declaration of incapacitation concerning women and men with IDs was annulled. The high value attached by women and men with IDs to being ascribed ‘social adult status’ is also found in a study of quality of life among people with IDs (Umb-Carlsson and Lindstedt 2011).

Consequently, for the interviewees with IDs in this study, the issue of parenthood was not what engaged them and they did not reflect on the societal call of discouraging individuals with IDs from parenthood.

Struggle against the disability lens

I have argued that voluntary childlessness is a social practice characterized by temporal and spatial varying context. In Sweden, this context includes interrogation of able childfree individuals and encouragement of childlessness among individuals with IDs. These messages are discernible in the motives of childfreeness given by the interviewees with IDs.

The lack of encouragement concerning parental abilities and the very childfree environment of the four interviewees with IDs separate the able childfree women and men from the disabled interviewees. Likewise, the different responses to hereditary diseases between childfree individuals with and without IDs may be interpreted as a consequence of being ascribed IDs. Whereas able persons with hereditary diseases are encouraged to become parents, and the experiences of the disease are seen as an advantage in parenthood (since they know how to handle and cope with the condition), the interviewees with IDs lack this kind of support.

Perceiving children as malicious can also, to a certain extent, be seen as a consequence of a segregated and childfree life. Mockery and violence are experiences shared by other members of the society who are perceived as deviating from the norm. According to Sherry (2004), being a victim of violence is an experience that unites queers and disabled people.

Social expectations about who should become parents and reactions concerning childfreeness are therefore influenced by power relations such as intellectual abilities, age, and gender. Analysing the motives for childfreeness of women and men with IDs reveals a complex web of societal pressures and expectations which stratify society and also construct the everyday lives of women and men with IDs (Söder 2009; Björnsdóttir and Traustadóttir 2010). This web is also sensitive to time and space.

Previous research on voluntary childlessness (Gillespie 2000; Morell 2000;) shows that womanhood is closely connected to motherhood. The link between womanhood and motherhood was also found among the women with IDs in this study insofar as fears of them becoming mothers seem higher than fears of men with IDs becoming fathers. Relatives had made sure that the women with IDs used contraceptives; one of the women had been sterilized and the other had contraceptive injections on a regular basis. The men with IDs had not been persuaded to use contraceptives and could not recall if they had discussed fertility prevention with anybody. This shows how the intersection between disability and gender varies due to gender as well as historical settings (Meekosha 2006).

Age plays an important role with regard to the pressure to enter parenthood, where younger women are put under more social pressure compared with older women (Fjell 2008; Engwall 2010a), but age also regulates life cycles. When Nirje (2003) introduced the ‘normalization principles’, the right to experience phases of development like childhood, youth, old age, etc. was included. Several of the interviewees talked about a point in life when suddenly all their friends were becoming parents and, later on in life, when there was a new baby boom and everyone suddenly had grandchildren. These stages of the life cycle were not experienced by the interviewees with IDs, probably because most of their friends were also without children, and also as a consequence of the childfree environment they lived in. The intersection of age and disability also appeared in the discussions on achieving adult status, where women and men with IDs faced strong resistance due to their IDs. These hardships have historical roots and seem to belong to the more persistent perceptions about individuals with IDs (c.f. Florin 2003).

In this matrix of several power dimensions influencing the lives of childfree individuals with IDs, the power axis of intellectual ability seems to overshadow other dimensions. Power relations such as gender and age have relevance but the ascribed position of IDs tends to dominate. Age and gender are permeated and valued through the disability lens. These reasons are influenced by the interviewees' ascribed position in society as ‘intellectually disabled’ and are consequences of living in a society characterized by segregation between able and disabled individuals. The combination of different power axes stratifies society and structures the opportunities given to the individuals with IDs in their everyday lives. Björnsdóttir and Traustadóttir (2010) describe this position as being ‘stuck in the land of disability’.

The fact that people with IDs are ruled out as parents also has an impact on childfree individuals without IDs. For them, it becomes important to show that their childfree status is chosen and voluntary and not due to poor parenting ability. This is probably one of the reasons why childfree individuals without IDs are eager to promote their potential parental abilities. It becomes a main issue to demonstrate a difference between those who are not seen as suitable parents and themselves, who have chosen childfreeness despite their faith in their parental skills. The alternative, to explain childfreeness in terms of weak parenting ability, might lead people to suspect some kind of disabilities (Gillespie 1999). This is a way of constructing a world of ‘we’ and ‘them’, of distinguishing disabled from able individuals, also within the sphere of childfreeness.

The Swedish societal structure, with its emphasis on intellectual abilities, creates difficulties for men and women with IDs to be ascribed adulthood. There are historical explanations – only 50–60 years ago the ‘feebleminded’ were institutionalized, sterilized, and legally segregated in Sweden. Still, despite new laws and entitlements, individuals with IDs face problems concerning their adulthood. The interviewees with IDs demand respect for making their own decisions of everyday lives. This transition from an ascribed passive identity to an identity of independence has been called a ‘resistance identity’ in accordance with Manuel Castells' theory (Barron 2002; Svensson and Tideman 2007). However, the women and men with IDs do not discuss parenthood as a way of achieving adult status.

The non-discussion about parenthood may be interpreted in different ways. On one hand, parenthood can be described as an under-discussed theme in their lives, ruled out by others. On the other hand, it may be seen as a consequence of their choice of being voluntarily childless. In accordance with other childfree individuals, they tell a story characterized by a lack of drama (Peterson and Engwall 2010). An important way of challenging the prevailing society's tendencies to see individuals through the lens of disabilities is to respect individuals with IDs, both as potential parents and as voluntarily childless, and thereby focus on the heterogeneity among individuals with IDs.

Notes

1. Sometimes voluntarily childless individuals resist the concept of ‘voluntary childlessness’ since it has negative connotations implying that they are missing out on something in their lives. Instead ‘childfreeness’ has been promoted (Dykstra and Hagestad 2007). In this article, ‘childfreeness’ and ‘voluntary childlessness’ are used synonymously. 

2. The experiences of interviewees without IDs have already been analyzed and presented in (Engwall 2010a, 2010b; Peterson and Engwall 2010; Engwall and Peterson 2011). 

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