Birth Stories of Mothers of Children with Down ...

Motherhood in the Context of Normative Discourse: Birth Stories of Mothers of Children with Down Syndrome Susan L. Gabel & Kathy Kotel

Journal of Medical Humanities ISSN 1041-3545 J Med Humanit DOI 10.1007/s10912-015-9367-z

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Author's personal copy J Med Humanit DOI 10.1007/s10912-015-9367-z

Motherhood in the Context of Normative Discourse: Birth Stories of Mothers of Children with Down Syndrome Susan L. Gabel 1 & Kathy Kotel 2

# Springer Science+Business Media New York 2015

Abstract Using birth stories as our object of inquiry, this article examines the ways in which normative discourses about gender, disability and Down syndrome construct the birth stories of three mothers of children with Down syndrome. Their stories are composed of the mothers’ recollections of the first hours after birth as a time when their infants are separated from them and their postpartum needs are ignored. Together, their stories illustrate socio-cultural tropes that position Down syndrome as a dangerous form of the Bother^ and mothers who give birth to children with Down syndrome as implicated in transgressing cultural norms. Keywords disability studies . birth stories . mothers . discourse . narrative In this article we show how mothers narrate normative discourse surrounding disability by describing their birth experiences as fraught with confusion, isolation, degradation, and feelings of invisibility. The three mothers of children with Down syndrome in this article occupy a subject position within Bdiscursive practices, power networks, or social fields^ (DiQuinzio 1993, 12) in which Bdeviance discourses of mothering^ (Jackson and Mannix 2013, 151) can feel hostile and dangerous (Keller 2010). The mothers describe healthcare professionals who ignore their postpartum needs, refuse eye contact, avoid the delivery room after birth, and neglect to acknowledge the personhood of the new baby. Their narrated memories represent the sociocultural tropes that position Down syndrome as a dangerous form of the other and mothers who give birth to children with Down syndrome as transgressing cultural norms.

* Susan L. Gabel [email protected] Kathy Kotel [email protected] 1

Teacher Education Division, College of Education, Wayne State University, 289 Education Building, Detroit, MI 48202, USA

2

National Louis University, Chicago, IL, USA

Author's personal copy J Med Humanit

The normative discourses of gender and disability Prenatal testing, selective abortion, and other reproductive technologies have made it possible for many mothers to choose what type of children to bring to term (Landsman, 1998; 2008). In fact, Marteau and Drake report in a 1995 study in three European countries, prenatal screening was the most significant factor influencing the assignation of blame to mothers for the birth of a child with Down syndrome. Strathern (1992) observes that the development of choice in reproduction has resulted in the tacit assumption that Bchildren…[are] the embodiment of their parents’ choices^ (31-32). Landsman (2008) notes that given the possibility of choice and control over birth decisions, mothers who opt for imperfect babies can become associated with imperfect choices and decision making. In what Landsman (1998) calls a choice-based framework, mothers who give birth to disabled infants are assumed to have chosen to produce either normal, healthy babies or defective individuals who are then classified as damaged goods (Landsman 2008). For the woman whose infant is born "damaged," the "other" is no longer a hypothetical possibility but a member of the family (Landsman 2008, 4) who has interrupted the script of the good mother with the antagonistic narrative of the dangerous other (Frantis 2013). The mother of the infant is a woman who has Bbetrayed the social order^ through the Bmoral failure^ of giving birth to abnormality (Pollack 1997, 13). The twenty-five mothers in Landsman’s (1998) U.S. study often feel the social stigma associated with giving birth to disabled infants and find it difficult to touch or be near their infants. However, other Bmothers construct narratives of hope, attributing to their infants culturally valued qualities that may not be readily apparent to outside observers or medical staff^ (78). Many of Landman’s mothers Brailed against society's, and often their own, prior exclusionary definitions of personhood^ (92), actively rewriting their narratives of motherhood and what counts as a life worth living and attributing Bpersonhood passionately to their own children^ (92). Deeply rooted in the social construction of gender, motherhood operates within historicized power structures. In her study of Israeli mothers, Weiss (1994) finds that mothers often tended to reject and abandon their disabled infants, referring to them as animals or monsters so that in seeking their death, they "did not feel like murderers killing a human being, but rather like people who were removing a non-human entity from the midst of mankind" (64). Warner (2005) suggests that Bit is worth considering how [mothers] might experience… normative discourse…when the script for motherhood is interrupted by disability or the threat of disability^ (13). The first author of this article writes that Bthe bar for normativity is set higher than ever within our increasingly competitive culture, luring many a mother to shipwreck herself in pursuit of an ideal^ (Valle and Gabel 2010, 6). BThere is social cache,^ s/he writes, Bthat comes with a child whose performance falls on the desirable side of the bell curve,^ and there is stigma associated with Ba child’s position on the undesirable side of the bell curve^ (12). Others have noted that society holds mothers responsible for the health and well-being of their children and can result in mother blaming or societal disapproval suggesting the mother who has a disabled or ill child is not the ideal mother (Jackson and Mannix 2013). Mother blaming is entrenched in the male-dominated healthcare literature, establishing a deficitoriented discourse that leaks into the delivery room. Landsman (1998; 2008) argues that mothers are held accountable for the perfect baby. When the baby is considered abnormal,


both baby and mother are diminished because, according to Landsman, the baby’s personhood is diminished. The mother and infant disabled at birth miss the cultural markers announcing personhood—acknowledgement, celebration, birth announcements, etc—thus devaluing them both and implicating the mother. Martin (2003) claims that Ban internalized sense of gender plays a role in disciplining women and their bodies during child-birth^ (54). As an institution, medicine has significant power over the birth experience, often treating women as passive recipients of medical care and alienating them from what could be an empowering experience. Social class also affects the birth experience. Birth plans, feelings of control during childbirth, and the management of pain and presentation of self during childbirth are all related to social class. For example, Martin (2003) finds that middle-class women feel more active during childbirth while working-class women often report fatalistic feelings. Gilligan (1982) and Brown and Gilligan (1992) refer to the Btyranny of the nice and kind,^ or the way in which women often try to behave like Bgood girls^ during birth, or what Martin (2003) refers to as Bgiving birth like a girl,^ a phrase that denotes the way many woman try to behave selflessly and graciously during birth as opposed to the stereotype of the screaming, hysterical mother in labor. Gender is deeply internalized as are the cultural tropes about appropriate gendered behavior that can make giving birth more difficult. This is particularly true when women avoid asking for what they need or refuse to put themselves at the center of the experience. Martin (2003) writes that her participants are Breluctant to impose on others for the help they needed during the birth process,^ and that they Btr[y] to be polite, nice, and kind^ (61) and tend to put others’ needs ahead of their own while in labor.

Down syndrome Down syndrome is typically considered a Bglobal defect naturally resulting in an individual who is an economic and social burden,^ writes Kliewer (1998, 3). The label of Bburden^ implies Bconnotations of a cultural black hole sucking in the precious resources of the community while emitting nothing of value in return, thereby leaving less for those of us who might individually advance the common good^ (3). The assumption that disabled people are burdens is rampant, according to Biklen, who writes that Bpopular culture sets up and/or confirms pessimism toward people with disabilities, and suggests no alternative scenarios^ (2000, 339). However, numerous authors have argued against associating disability with pathology and argue for understanding and accepting disability as difference (Kliewer 1998; Kittay 1999; Gabel 2010) and significantly disabled people as moral beings rather than objects (Kittay 1999; Wong 2010). Harmon (2009) and Shakespeare (2008) observe that 99% of the parents who are given the prenatal diagnosis of Down syndrome choose to abort the infant. However, a small number of parents do not choose abortion while others are not aware that their infant will be born with Down syndrome. In those cases, the words, BWe think your baby has Down syndrome,^ are often followed by a laundry list of Bwon’t be able to’s^ or Bmost likely cannot’s^ and other statements about the child’s suspected deficits. In many cases, the infant with Down syndrome enters this world surrounded by hope and love that can be stripped immediately away and replaced with disappointment and fear. The joy of a new life is tainted by the unexamined, misunderstood, imposed assumptions of others.


These assumptions include the belief that the quality of life for people with Down syndrome is poor (Carlson 2010). The ethicist Peter Singer (1993) echoes the common assumptions articulated to new parents of a child with Down syndrome when he writes that: We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer [sic] or tennis player. (256). Singer is implying that parents of children with Down syndrome must lower their expectations; however this inadvertently sets a negative tone and portrays difference as something to be devalued. Kittay (2008) refutes the notion of individuals labeled severely or profoundly intellectually impaired, which is sometimes the case for individuals with Down syndrome, as incapable of personal and social relationships, creativity, and achievement. Kittay observes that Beven profoundly mentally retarded [sic] individuals are far from being unresponsive to their environment and to other people^ (126). Ferguson and Asch (1989) set a different tone than does Singer, writing that Bthe most important thing that happens when a child with disabilities is born is that a child is born^ (108). Kittay (2008) agrees, stating that Bthe most important thing that happens when a woman becomes the mother of a child with disabilities is that she becomes the mother of a new child^ (147). Kittay writes that Bfor many women, mothering begins in a fiercely passionate love that is not destroyed by the ambivalence and anger it includes^ (29). Recognizing this, Landsman (1998) notes that a mother’s anger and the ability to Bassert one's own knowledge about one's child, as opposed to accepting medical professionals' opinions automatically, becomes for many mothers the special hallmark of nurturing and mothering a disabled child^ (83). Referring to Ruddick’s (1980) groundbreaking work on mothering, Cowdery and KnudsonMartin (2013) articulate that mothers take on a nurturing identity as a result of the caregiving work they do rather than as a result of identification via attachment. BAs mothers interact with their children,^ they write, Bthey create deep emotional bonds that influence maternal and connected ways of thinking^ (335). However, for mothers who give birth to infants with Down syndrome there can be the confusion of ambivalence and anger. What can be understood about the anger and ambivalence of mothering, particularly for mothers who give birth to children with Down syndrome? What do mothers remember about the first moments after birth? What are the signals that something is Bwrong^ and that motherhood is not what had been anticipated? How do mothers respond to these signals? In this article, we use the birth stories of three mothers to uncover possible answers to these questions.

Narrative and birth stories Narrative (or storytelling) is an ancient tradition that comes naturally to humans (Josselson 2006; Moen 2006; Smith and Sparkes 2008; Lai 2010; Wiklund-Gustin 2010). Narratives help to organize experience into meaningful stories or texts that construct reality and articulate identity. Stories are historically situated within a storyteller’s pasts, presents, and futures (Moen 2006; Lai 2010) but are always told from the perspective of the present (Ochs and Capps 1996). Remembering and re/telling past events is influenced by what has occurred since the event and who the narrator has become as a result of experiences between events and can also offer a critique of the narrator’s past self. Such stories reformulate experience into explanations of the discrepancy between expectations and actuality.


Smith and Sparkes (2008) argue that narratives reveal Bsocio-cultural life…society and culture ‘speak themselves’ through an individual’s story^ (18). Lawthom et al (2004) further argue that Bnarratives may be our best hope of capturing structures that continue to shape, divide and separate human beings^ (xiiiii-x). Thus, the mothers whose stories are included here are not the focus of this article, nor do we present them as empirical fact. Rather, our focus is on what the mothers’ stories have to show us about the normative discourses surrounding motherhood, birth, and Down syndrome. Ochs and Capps (1996) note that narratives both come out of experience and shape experience, that they are fragile Bversions of reality^ (21) dependent on memory of things past. BLives,^ they write, Bare the pasts we tell ourselves^ (21) but are told from the perspective of the present. Narratives of personal experience can take many forms, such as verbal, visual, or performance, and all are Bembodied framings of a sequence of events^ (19) recalling Hanson et al’s theater of birth metaphor. A narrator stands at the center of a story, even when the story is about someone else. The narrator’s future is impacted by the telling of a story, thereby creating the hermeneutic circle to which Lai (2010) referred: Bthe story is based on the pre-understanding of life and the stories told about life change it into a more fully developed understanding of life^ (75). Ochs and Capps (1996) add that narratives try to Bresolve discrepancy between what’s expected and what happens,^ thereby exposing participants to Blife’s potentialities for unanticipated pain and joy^ (27). In other words, stories are texts under construction, as are the lives and identities of the storytellers. Narratives can extend beyond the individual to form social and cultural tropes (Smith and Sparkes 2008). Lawthom, Clough, and Moore (2004) argue that stories or narratives are Balways politicized, structured, culturalised, and socialized^ and Bmay be our best hope of capturing structures that continue to shape, divide and separate human beings^ (viiii-x). Lavlani (2011) agrees, noting that master narratives can be reframed as cultural scripts situated in political and social contexts. The birthing experience has been referred to as a drama with a script or master narrative, a cast (e.g., healthcare providers, parents), and a story arc (Hanson, VandeVusse, and Harrod 2001). The birth of a disabled infant interrupts the expected drama with an unexpected narrative and cast of characters and alters the story arc with an unanticipated and Btroubling turn of events^ (Ochs and Capps 1996, 26) that signal a transition from one life course to another unwanted or unpredictable life course. Pollack (1997) observes that birth stories integrate birth with the politics of the body. They are embodied narratives that Bput the maternal body—in all of its carnal, social, and political plenitude—center stage^ (15) in which mothers’ ongoing definitions and redefinitions of their experiences are imbued with physicality and the vocabulary of the body. Birth stories Btease us into a kind of freak-show confidence in our own normality^ (13) while also denying the possibility of death or deformity. In contrast, the birth stories of the mothers in this article illustrate the ways in which the instrumental and relational technologies of birthing can be used as a dividing practice (Foucault 1982), severing the ties between mothers and their newborn infants when things go differently than expected. Through their stories, the mothers in this article constitute motherhood in the context of difference. Their stories reveal society to itself by illustrating socio-cultural tropes that position Down syndrome as a dangerous form of the Bother^ and mothers who give birth to children with Down syndrome as implicated in transgressing cultural norms.


Inquiry process and interpretive strategies We used Riesmann (1993) and Smith and Sparkes’ (2008) notion of narrative analysis as a Bmethod that takes the story itself as its object of enquiry^ (Smith and Sparkes, 19). The following birth stories are excerpted from a series of open-ended and semi-structured interviews with two participants collected by the second author during her dissertation research in 2011. The original research project from which the birth stories are drawn was a qualitative study of the ways in which mothers of children with Down syndrome advocate for their children by breaking down barriers to inclusion in schools and society. Birth stories emerged resulting from the second author’s prompt of each mother to begin telling her story by starting with her child’s birth, viewed as a starting point or a way to engage the participants. At the time, birth stories were not viewed as a focus of the study. Later and after realizing that the birth stories were interesting and provocative, the first author wrote her own birth story, also excerpted here. This culminated in the availability of three birth stories. Due to the manner in which they were collected and our secondary analysis of them using a critical interpretive lens, we do not view these excerpts as empirical data. Rather, the excerpts offer an interpretive critique of normative discourse and are what Chase (2005) refers to as short topical stories. The birth stories were not intended as a focus of the original research. However, they impressed us as contributing to Ba deep knowledge of individual experience^ (Lieblich 1998) situated within normative discourses. In extracting them from the original interview texts, we follow Gubrium and Holstein’s (2009) directive that Bthe narrative process—from start to finish—yields an ever-emergent, pliant product that should be treated as something more dynamic than a…text^ (42). Furthermore, Gubrium and Holstein (2009) argue that narrative is meaningful in how it is linked to other things, and Lieblich (1998) claims narrative can be used philosophically. In our case, we link the mothers’ narratives to normative discourse. As such, we attempt to represent the mothers’ birth experiences from their own perspectives even while using their narratives as a way to understand the broader socio-cultural milieu of normative discourses and the ways in which they construct mother’s birth experiences. The mothers in the second author’s dissertation research are all white upper-middle class women who are married to the fathers of their children with Down syndrome. They are well educated, have professional careers, and are friends. Each mother is an advocate of inclusion for children with Down syndrome. During the time frame reflected in their birth stories, each mother had what she believed to be good healthcare and health insurance. Their status as women of privilege highlights the power of normative discourses more obviously than could be done if race or social class oppression influenced their birth experiences. In other words, the mothers’ privilege makes their narratives powerful in part because their experiences are unlikely to be connected to racial or social class discrimination.

Second author’s birth story: BThat’s OK. They are beautiful children.^ The second author was a middle school English and social studies teacher for many years prior to staying home to raise her children. As her children grew, she returned to school to earn her Educational Doctorate (EdD). Talia, her second child who was twelve years old at the time of this narrative, was born with Down syndrome. Here she recounts her memories of the first few moments after the birth. The second author’s memories of the discourse used to describe her


daughter to her suggest that even in those first few hours after birth, for the second author, Talia had become a medical object. I was waiting for the pediatrician to arrive the moment I realized that my daughter was born with Down syndrome. I had been told the doctor needed to talk with me about some concerns regarding my daughter’s heart. I was not given much information prior to meeting with her, however the words heart defect, open heart surgery, cardiologist, floppy, and muscle tone were being used to describe my daughter, Talia. Her birth was different than the birth of my son, 15 months earlier. In fact, the hours after her birth were significantly different. I was not allowed to keep my daughter with me immediately after her birth. The nurses rather quickly took her from me, assuring me it was policy, BThe baby needs to be seen by the neonatologist within an hour of birth,^ they said. The second author remembers the separation from Talia and the way in which Talia immediately became an object of medical rather than maternal attention. The dividing practice of removing a newborn from the mother can be disorienting and disturbing, as can the ways in which people react to mother and baby, as seen in the following excerpt. Here, the second author feels like damaged goods, ignored as a result of delivering a damaged infant and missing what Landsman (2008) refers to as cultural markers. I don’t remember any congratulations or excitement about her birth. I felt abandoned by the nurses and doctors. I remember the sudden silence when she entered the world and was held in the hands of the doctor. From that moment and for a long time afterward, whenever there was an exchange of words between the medical professionals and me, there was no eye contact. No one came into my room, even to care for my post-delivery medical needs. I was avoided. In the next excerpt, the second author remembers the discourse of deviance of those first hours after birth. This is in the context of the lack of other forms of relational contact (e.g., hugs, congratulations, well wishes, holding the baby). The turn of events the second author describes signifies the transition from an anticipated life course to an unanticipated and perhaps dangerous one. So, I waited for the pediatrician. When she walked in I saw a look on her face; a serious look yet one of great concern with a touch of compassion. She began by telling me that my daughter had significant congenital heart defects and would need to have at least one open-heart surgery, and possibly more, to repair the holes in her heart. She then went on to explain that she had low muscle tone. Not knowing what this meant I asked for further explanation. She used the term floppy to describe her muscles. She asked if I had seen her eyes. I wondered if my daughter would be blind. Then it hit me. I knew. I turned to her and asked, BDoes she have Down syndrome?^ She replied, BI believe so, but we will need to do genetic testing in order to confirm.^ I immediately said, BThat is OK, they are beautiful children.^ The above excerpts illustrate a culturalized narrative of the birth of a child with Down syndrome: lack of eye contact, congratulations, or happiness; medicalized identity formations; avoidance. Next, the second author describes what Pollack (1997) refers to as Bplaying with disaster^ as well as a Bconfidence in [her] own normality^ (13).


I did not sleep well for days and often woke hoping this was a bad dream and it would all go away. Many times afraid to open my eyes, I negotiated for the opportunity to turn back time and have this all go away. I did not want this. This is not what I wanted out of mothering. I never thought about mothering a child with a disability and serious medical conditions. My life was supposed to be good. I was good with children. I was the Kool-aid mom before I even had children. I was the teacher who loved all children. I was the favorite aunt; not the mother of a child with a disability. Children with Down syndrome belonged to other mothers.

Sara: the deep, black hole Sara is the birth mother of three children. Her second child, Danny, twelve years old at the time of this narrative, was born with Down syndrome. Neither Sara nor her doctors had any concerns prior to delivery of her son and opted not to do any genetic testing. In the following excerpt, Sara, too, describes being separated from her baby and a doctor who does not enter her room. She plies the doctor for information and remembers the doctor’s reluctance to answer directly her question, suggesting avoidance or discomfort with the situation. First, there is the avoidance of the Sara’s recovery room, then there is the avoidance of Sara’s direct questions. Both recalling a discourse of dangerous deviance. An hour passed, and then two hours passed, and all this time I’m like, why isn’t he with me? And still didn’t put two and two together. Maybe five hours later, I’m like where is my son? I don’t understand. Why isn’t he here? They finally brought him back and at the same time the neonatologist had come to the room and she’s still in the entryway and didn’t come near us, and she just starts talking about chromosome abnormalities and I’m trying to process all this and she reiterates, BWe think he may have a chromosome abnormality.^ And I’m like, BWhat do you mean? Do you mean Down syndrome?^ And then . . . she wouldn’t say BDown syndrome,^ it was, BWell, we need to do testing for a chromosome abnormality.^ BDo you mean Down syndrome?^ And she’s . . . BWell, possibly.^ The culturalized narrative of giving birth to a child with Down syndrome can be interpreted by a mother in Sara’s situation as indicating the silence and avoidance associated with the taboo of deviance. Sara further describes the trope in the next excerpt. She [the doctor] never approached us, so our initial experience with this was already a negative one: very little eye contact; it was uncomfortable coming into the room; was uncomfortable approaching my husband and I. I thought that was really odd. So then it was just kind of a dark, black hole we went into, because I wasn’t expecting it. The birth of a child is often a congratulatory, celebratory experience that establishes the personhood of the infant and the value of the mother (Landsman 1999). Many times, celebratory hugs and embraces are shared by all, including the medical staff. Consulting physicians enter a room, introduce themselves, close the patient’s door for privacy. In Sara’s case, the neonatologist would not enter the room, creating physical distance between the neonatologist and the parents in what could have felt like an act of rejection and avoiding the danger zone of abnormality.


Danny was born on January 1, and was the first baby born in the New Year at that particular hospital. Usually, the first baby of the New Year is celebrated with gifts and congratulation announcements. Sara describes, again, the silence surrounding Danny’s difference. Did we get any celebratory baskets or any congratulations for being the first baby born January 1st, 1999? No. We got absolutely nothing. Nothing. No congratulations, no nothing. I ended up calling the hospital after the fact to express my disappointment at how it was handled. That was the worst day of my life. I was living a nightmare, I was not happy, I was not joyous, and one of my worst fears was that every January 1st would bring up all those negative feelings that I had on his actual birth day. This blatant expression of normative discourse, ignoring the first baby to be born in this hospital in the new year, moves Sara to action in ways that other slights did not move the mothers, all of whom describe a passive, stunned response to their birthing environments. Sara’s story of active response well after the birth is in contrast to her Bgood girl^ response at the time of the birth. Sara shares the second author’s birthing experience of having confidence in her own normality and, like the second author, hopes it is all a dream. A lot of it back then was a big blur. My husband was in a state of shock, just as much as myself, and why us? This doesn’t happen to people like us. We try to be good. We don’t hurt anyone. I was initially thinking this was the absolute worst nightmare that we were living. We truly were living a nightmare. I remember thinking, BOK, this is all a bad dream and I’m going to wake up and Danny’s going to be typical, he’s going to be ‘normal,’ he’s not going to have DS, and everything will be perfectly fine.^ I remember that, and that was kind of . . . after he was born, I went into a black, dark hole. Thinking this isn’t true; this isn’t real. I immediately started thinking about the negative: How are we going to afford this? How is Danny going to go to school? Will he ever walk? Will he ever talk? Will he ever be happy? Will he have friends? Will he be able to learn? Both Sara’s and the second author’s stories suggest that normative discourse is associated with goodness, as Pollack (1997), Jackson and Mannix (2013), Barlow (2004), and Landsman 2008) argue. Before birth both women consider themselves good people, good mothers, good citizens yet after birth they are Bmoral failures^ who deliver Babnormality^ into the world (Pollack 1997). In their stories, both women try to justify that by being Bgood^ they did not deserve to give birth to a child with Down syndrome. Sara had little experience with disabled people prior to Danny’s birth. She remembers that her mother would pull her away from people with disabilities when they would see someone in public. In the next excerpt, Sara talks about the identity she initially assigned to Danny, a result of historic politicized and socialized narratives. Looking back, what I remember about growing up, about people with Down syndrome was they were typically older, they were overweight. I envisioned them usually in the shopping mall holding hands with their mother or father who was significantly older. When I was growing up, people with intellectual disabilities weren’t around. I also remember that when we would be walking in a mall, and there would be someone with Down syndrome or an intellectual disability my mother would grab my hand and pull me a little closer. Sara also recounts her early identity formation of mothers of children with Down syndrome. This is an image contrary to her image of herself. Sara’s Bscript for motherhood^ has been


Binterrupted by disability^ (the first author 2010, 13), as was the second author’s when she said that Bchildren with Down syndrome belong to other mothers.^ When Danny was born [I thought] things like this don’t happen to me. I’m like very normal, run of the mill. I’m not 60 years old, and I do not have long greasy hair with dandruff, because that’s also what I envisioned someone to have a baby with Down syndrome. So I didn’t fit the profile.

Jenna: miracle to mistake Jenna is the birth mother of four daughters; two of whom were born with Down syndrome. Jenna’s second oldest child, Samantha, is her oldest daughter with Down syndrome. Samantha was eight years old at the time of this narrative. Jenna describes many events leading up to the birth of Samantha as Bmiracles.^ Jenna enters the delivery and birth of Samantha with high expectations. She has overcome so many obstacles during her pregnancy: bed rest during the first trimester, questionable blood test results leading to an ultrasound that does not indicate any significant concerns, and breech positioning of the baby during the early phase of delivery. Jenna refers to Samantha as the Bmiracle^ baby and her expectations of wanting to experience the Bover-the-top^ or Bmountaintop^ feeling that she had with her first child, who does not have Down syndrome. All these little miracles that were happening. So we get to the time, BYou’re at ten [centimeters].^ And everything was great and I literally pushed the baby out in two pushes. It was really easy. And I’m like, oh my gosh, it was an easy delivery. Mountaintop experience. Then they handed me the baby, and when I see the baby, I go, BOh, my gosh, I can’t believe it’s a girl.^ They go, Bit’s a girl.^ My two first thoughts were, BI can’t believe it’s a girl. Oh my gosh, she looks like she has DS.^ And my doctor goes, BNo, no, no, no. she’s fine; she looks great; she’s beautiful.^ In the above excerpt are several normative words: Bshe’s fine,^ Blooks great,^ Bshe’s beautiful.^ Jenna’s is an embodied narrative, one that initially puts her body in Bcenter stage^ (Pollack 1997, 15), but then the delivery room activity changes, and Jenna becomes disembodied, divided from her daughter and herself, as seen in the next excerpt. Unlike the second author and Sara, Jenna separates herself from her infant in spite of the doctor’s reassurance, BShe’s beautiful.^ And then it didn’t matter because at that moment my soul left. I don’t know how to describe it, but the spiritual piece of me or whatever it is left my body and I felt like I was looking down from up here, and watching what was going on. The hustle and bustle. And I’m lying there, and she’s like, BOh my gosh. Yeah, you know, it’s a girl. She’s beautiful, she’s beautiful.^ But I knew. I knew. So they take her to the little layette and the doctor and the nurse are both looking at the baby. They both look up, glance at each other, gave the glance like, BYep,^ and looked back down. And I’m like, BThat’s another confirmation.^ So, like I said, that was a whole out-of-body experience. Regardless of whether or not the nurse removes the baby, Jenna discursively removes the baby with normative discourse by imagining her baby as a monster. Next, Jenna notices, as did the second author and Sara, the not-so-subtle changes in those around her once her baby was born:


The other piece of it, too, is the way the people treated me in the hospital. I mean it was like a death happened. [People would say,] BI’m sorry.^ It was not celebratory at all. Some people faked it. But then as soon as they left the room, they were bawling. Sara uses the phrase Bdeep black hole^ to describe her sense of being lost and alone after the birth of Danny. The second author talks about hoping to wake up from a bad dream. Jenna describes a feeling of the heaviness, shock, and dread. Each of their descriptions draws the story away from the maternal body, so often the center of the birth experience, and toward thoughts of the damaged other. Their anticipated story arcs are disrupted, their cast of characters is changed unpredictably, and the women try to resolve the discrepancies between what they expected and what has happened. I think it was just her look. Did I feel anything? The moment I saw it, my heart sank. It’s so deep I can’t even describe what it was. It was like getting the phone call that your kid just got into a car accident and died. That deep. I don’t know if it was grief or shock. But I closed down because you’re doing this with your heart. It was so heavy because my thoughts went from a miracle to a mistake. This kid’s a mistake. This kid’s not supposed to be here. I wanted to sew me, wrap it up, I’m leaving. I want to act like this never happened. All three mothers wish their situations could be different. Jenna wants the entire experience of giving birth to her daughter to be nonexistent. They resist the transition from one state of affairs to another and want to retrieve the narrative they expected. I wanted to just get out of there. I truly did. I didn’t even want to see her again. I didn’t want to hold her. I was like, BWe need to leave and we need to pretend like this never happened.^ For a while, Jenna disassociates herself from her infant. BTo me she was not a baby,^ Jenna says. She was a Downs, not even a Downs baby. She was a Downs person. Not even a person. Like a monster. Like an organism that’s just not a baby. While the second author and Sara talk about doctors and nurses separating them from their infants, Jenna describes a mother’s own dividing practice when she cannot acknowledge Samantha as human. From Jenna’s perspective soon after giving birth, losing a child was more bearable than being a mother of a child with Down syndrome. In the following excerpt, Jenna expresses what Pollock (2013) identifies as Bflirting with death^ (13), a common response of mothers whose children are born disabled or seriously ill: I wanted her to die. I shouldn’t say this, but . . . well, no, I should say this, if she had a heart condition, trust me, I would have been praying that she dies. This is really sad but where I was at that time in my life. That’s who I was. When I was at Bed Bath and Beyond, I had the baby covered in her little carrier. I didn’t want to take the blanket off because I didn’t want to have people look and say, BOh, yeah, she has DS.^ I had no idea how to handle that. As do the other mothers, Jenna has a cultural image of mothers of children with Down syndrome. Lai (2010) refers to this aspect of the mothers’ stories as the Bpre-


understanding of life^ (75) or a way of interpreting lived experience by connecting it to one’s biases, previous observations and experiences, and cultural orientations. In these mother narratives, the infants with Down syndrome are not alone in their stigma and abnormality. By virtue of giving birth to them, the mothers have become defective, dirty, and Bweathered,^ as Jenna says below. I was afraid to connect to other mothers with DS because, in my mind, women who have kids with disabilities or DS or mental issues are ugly and fat and greasy. And [they have] thick glasses and ugly teeth because they’re weathered, they’re stressed. I like to be fit and I like to look nice and have myself together. I was a school social worker for 12 years prior to that, so the people and the [mothers of the] kids in the BD class and the ED class and the kids in the special needs, they never wore high heels and makeup. They were frumpy. Now I’m generalizing and I’m very wrong.

Conclusion As an interpretive inquiry, we make no claim to generalizability; however an article by Elmir, Schmied, Wilkes, and Jackon (2013) describe similar themes. In what they call a meta-ethnography, Elmir et al listed the perceptions and experiences of women who have had traumatic births. They analyzed ten studies representing approximately 398 women’s traumatic birth experiences and identified five themes common to the women in the studies: feeling invisible and out of control, birth care as inhumane and degrading, feeling trapped, having a rollercoaster of emotions, and disrupted relationships. All three women in this article describe feeling invisible. The second author talks about the lack of attention to her post-delivery physical needs. Jenna imagines herself as disembodied, floating above the scene. Sara went into a black hole. Though none of these mothers describe inhumane treatment, some of their stories can be interpreted as degrading treatment, particularly in their descriptions of being ignored post delivery. The women vividly describe feelings of being trapped and wish their deliveries had not happened or imagined things to be different. They also describe the rollercoaster of emotions found by Elmir et al. Finally, relationships are described clearly as disrupted, or what we have called divided. The babies are taken from the mothers for long periods of time without explanation. The women describe feeling disconnected and distant from their newborns, though they later establish strong bonds with them. Unlike non-traumatic births, these women have been deprived of the physical and emotional support that usually comes with birth (e.g., hugs, congratulations, well wishes). Instead, the women experience common social responses to disability and to mothers who transgress by giving birth to disability: glancing, avoiding eye contact, pulling away, hushing, pointing, silence, and apologies. In all, these women experienced something quite different from what Pollack (1997) describes as the carnal, maternal body in center stage during birth. The narratives of the three mothers in this article illustrate the power of the trope of the good mother and the mothers’ fear of social disapproval resulting from giving birth to infants with Down syndrome. They recount the births using the normative discourse of Down syndrome. They describe themselves as Bgiving birth like a girl^ and for brief moments imagining their infants’ deaths. Their images of mothers of children with Down syndrome do not cohere with their images of themselves. BThose^ mothers are dirty, tired, and what


Jenna describes as Bweathered.^ In effect, by situating mothers of children with Down syndrome as others, these narratives implicate the storytellers as transgressors separated from their infants by others, as are the second author and Sara, or through their own volition, as is Jenna. Stories are historically situated within storytellers’ pasts, presents, and futures (Lai 2010; Ochs and Capps 1996). The retelling of past events is, by necessity, done through the lens of the present and informs how one interprets and tells the stories of the future. Or, as Ochs and Capps observe, Blives are the pasts we tell ourselves^ (21). This is the hermeneutic circle (Lai 2010) within which the second author and her participants tell their birth stories. One can interpret their stories as their present selves chastising their younger selves. Today, these women might be less likely to describe Bgiv[ing] birth like a girl^ (Martin 2003) and might be much less Breluctant to impose on others for the help they need during the birth process^ (61). During the twelve years between giving birth and telling their stories, the mothers have become strong advocates for inclusive education. They have worked to assure that their children are not taught in segregated classrooms. They have become familiar with the critique of special education emerging from the field of disability studies. In this sense, their narratives could be interpreted as the mothers’ critique of and resistance to normative discourse, though they may not describe them as such. Whether they intended their birth stories to be read as factual accounts or as critiques, their stories offer insight into the early moments of the construction of disability in the life of a child and his/her mother. The narratives have implications for medical practice and future research about normative discourses and disability. Medical practitioners are urged to be aware of their own embodiment when attending post-natal mothers. Use culturally appropriate eye contact, physical touch and proximity, and spoken words when interacting with a mother who has given birth. For example, if eye contact is a cultural norm, give the mother eye contact even when something unexpected has happened. If it is the norm for a physician or nurse to enter the mother’s room, this should be done even when something unexpected has happened. Avoid hushed tones and other behaviors that signal taboo or danger. The narratives in this article illustrate how sensitive mothers can be to any unusual changes in behavior or language of medical staff. Instead, congratulate the mother on the birth and attend to her needs as well as the needs of her infant. Future research should consider that there is scant narrative research about mothers who give birth to disabled infants. We found no other narratives to assist us in our work. Retrospective narratives are useful, but hindsight suggests that collecting birth stories soon after birth might offer an interesting contrast to these retrospective accounts. However, it may be difficult to secure participants for such a study given the stress on new mothers. These narratives demonstrate importance of secondary analyses in qualitative research. Qualitative researchers always are faced with an abundance of qualitative information through which they must sift. It is difficult to pay attention to all information collected and sometimes, important insights are overlooked. Birth stories were not the focus of the second author’s dissertation study, and the evocative nature of these stories was only later realized. Rereading and reinterpreting the stories gives them new attention and can be a useful strategy in future qualitative studies. As we write this conclusion we think of even more ways of interpreting the mothers’ birth stories. The usefulness of narrative is in the fluidity of its meanings. Compliance with ethical standards There were no sources of funding or conflicts of interest for this research. Informed consent of participants was gained prior to starting the research. A university review board approved the research as ethical.


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