MOTHERHOOD, PARENTING, AND REPRODUCTIVE RIGHTS
Motherhood, parenting, and reproductive rights are diverse subjects but interconnected, especially for women with disabilities. In this section, we take into account of different viewpoints and arguments around the moral dilemmas between disability rights and women's rights, especially concerning controversial subjects such as bioethics, selective abortion and genetic testing. The issue of motherhood and parenting is also addressed from a range of perspectives, including the experiences of motherhood by women with physical and mental disabilities, some resources concerning mothers of children with disabilities, as well as the perspectives of professionals and service providers who are involved with these mothers. And more mothers with disabilities are becoming the subjects of scholarly research and resources on complications as a result of disability on pregnancy are also included.
Altschuler, J., & Dale, B. (1999). On being an ill parent. Clinical Child Psychology and Psychiatry, 4
Limited research and clinical attention has been paid to the experience of being an ill parent, so that parents are given little support in preparing for the effect their illness might have on their children. In this article, we explore how parents manage being a patient and a parent at the same time, focusing on three themes which have emerged: parental fears that illness renders them less fit to meet the needs of their children; dilemmas about balancing self-care with the care of others; and how the illness can evoke feelings that relate to previous trauma, influencing their responses to their children in the present. We highlight how these issues do not happen in isolation, but in the context of ongoing intimate, family relationships. We suggest that if they are not addressed, parents and children are left unprepared to meet the demands which illness poses. Finally, we examine the implications for clinical work in this area.
This article is of interest due to the fact that women are typically the primary caregivers of children.
Alvarez McHatton, P., & Correa, V. (2005, Fall). Stigma and discrimination: Perspectives from Mexican and Puerto Rican mothers of children with special needs. Topics in Early Childhood Special Education, 25
The purpose of this study was to investigate the experiences of stigma-related discrimination in 50 Puerto Rican and Mexican single mothers of young children with disabilities. Mothers were interviewed on issues related to raising a child with disabilities. This was a preliminary exploration of the stories mothers told specifically related to discrimination. A qualitative analysis of the transcripts revealed clear evidence of discrimination as a result of culture, disability, and a combination of culture and disability. Professionals and strangers were responsible for the majority of the discrimination. Experiences were related to the higher number of interactions with service providers, lack of English language proficiency, being the solitary caregiver for their child with a disability, their status of "other," and the internalization of that status.
Al-Yagon, M., & Gali Cinamon, R. (2008, May). Work-family relations among mothers of children with learning disorders. European Journal of Special Needs Education, 23
The study examined conflict and facilitation in work-family relations among working mothers of children with learning disorders (LD) or with typical development. The study also focused on three maternal personal resources (maternal anxious/avoidant attachment security, affect and sense of coherence) as antecedents of these work-family relations, and examined outcomes of such conflict and facilitation between the two life domains, as they affected patterns of close relationships within the family (child attachment and family cohesion). The sample included 96 mother-child dyads: 48 mothers and their children with LD; and 48 mothers and their typically developing children. Children's ages were 8-12 years. All attended public elementary schools in urban areas of central Israel. Significant group differences emerged on mothers' family to work conflict and on mothers' work to family facilitation. Findings indicated that several maternal personal resources were antecedents of these relations and also contributed to differences in mother-child attachment relationships and family cohesion. Discussion focused on understanding work-family relations among these mothers of children with LD, as well as the influence of maternal personal resources on patterns of close relationships (i.e., child attachment, family cohesion).
Anderson, L. (1985). The Lois Anderson story. In S. E. Browne, D. Connors, & N. Stern (Eds.), With the power of each breath: A disabled women's anthology
(pp. 275-279). San Francisco: Cleis Press; Hyler, D. L. (1985). To choose a child. In S. E. Browne, D. Connors, & N. Stern (Eds.), With the power of each breath: A disabled women's anthology
(pp. 280-283). San Francisco: Cleis Press; LeMaistre, J. (1985). Parenting. In S. E. Browne, D. Connors, & N. Stern (Eds.), With the power of each breath: A disabled women's anthology
(pp. 284-291). San Francisco: Cleis Press.
All three chapters are written by women with disabilities where they describe their experiences of motherhood.
Andrews, M., & Lee, S. S. (2005, Spring). Parent advocacy in a gendered organization: Participatory research, action, and analysis. Advancing Women in Leadership, 18.
San Antonio, TX: Advancing Women. Retrieved October 24, 2006 from http://www.advancingwomen.com/awl/social_justice1/
Hegemony of gender served as the fundamental premise of this study of four women as they struggled to achieve social justice for their children with disabilities. The study examines the gendered organization of schooling in one, small, rural school district in the American Midwest, and serves as a lens for viewing the hegemony of gender in American society. Other sources of data included: minutes from Board of Education meetings; newspaper accounts of Board meetings; school district policy statements; State Department of Education records; school district financial records; community attitudes, as reflected in letters to the editor in the newspaper; letters; legal documents, including reports from the Office of Civil Rights; and video-tapes of Board of Education meetings.
Areschoug, J. (2005, September). Parenthood and intellectual disability: Discourses on birth control and parents with intellectual disabilities 1967–2003. Scandinavian Journal of Disability Research, 7
In 1975, the sterilization of persons with intellectual disabilities was banned in Sweden. The ban can be regarded as an expression of a changed attitude towards persons with intellectual disabilities and towards their right to equal living conditions during the latter part of the 20th century. The question addressed in this study is whether this shift was paralleled by a changed discourse on intellectual disability and parenthood. I will argue that childbearing and parenthood in relation to individuals with intellectual disabilities have continued to be described as problematic and, therefore, as best avoided. The changed discourse on the rights of intellectually disabled persons, however, made it discursively impossible to suggest a coercive application of birth control methods. Instead, birth control was now introduced as an option and a benefit for the woman.
Arias, R. (1994). Groupwork with women who have a child with a developmental disability. Australian Social Work, 47
The purpose of this paper is to show how groupwork with a feminist approach can be an effective and empowering form of intervention for women who are mothers of a child with a developmental disability. Women are usually the primary carers and are often isolated with no-one to share their thoughts, feelings and concerns. A group provides an opportunity to bring some of these women together to share their experiences and offer each other emotional support, feedback and practical help. The content of the group looks at issues related to women in general as well as specific issues related to disability.
Asch, A., & Fine, M. (1988). Shared dreams: A left perspective on disability rights and reproductive rights. In M. Fine & A. Asch (Eds.), Women with disabilities: Essays in psychology, culture, and politics
(pp. 245 268). Philadelphia; Temple University Press.
This chapter addresses women's right to abortion and the right of newborns with disabilities to medical treatment. Both sets of rights, which are currently under severe attack, have frequently been juxtaposed as a contradiction. The authors argue that although women's right to abortion and the right of newborns with disabilities to medical treatment are separate rights, they are compatible and it is essential to protect both sets of rights.
Atkins, C. G. K. (2008). The choice of two mothers: Disability, gender, sexuality, and prenatal testing. Cultural Studies <=> Critical Methodologies, 8
This article employs an autoethnographic method in describing and analyzing the moral dilemmas faced by two lesbian mothers when they contemplated prenatal, genetic testing options during two pregnancies. It focuses on the inconsistencies in their decision-making processes-that is, that these same parents opt to do amniocentesis for one pregnancy but choose not for another one fewer than 2 years later. The discussion highlights the influence that contextual factors have on the discrepancy in their reasoning and behavior. By critiquing both the mothers' rationales and clinicians' approaches to these procedures, the article seeks to show that the weakness of employing ethical and counseling paradigms and discussions in highly contextual, real-life situations.
Aunos, M., Goupil, G., & Feldman, M. (2003). Mothers with intellectual disabilities who do or do not have custody of their children. Journal on Developmental Disabilities, 10
(2), 65-79. Retrieved April 1, 2005 from http://www.oadd.org/publications/
Many parents with intellectual disabilities (ID) lose custody of their children due to real or perceived parenting inadequacies. It is not clear how parents with ID who keep their children differ from parents who lose their children. In this study, 30 mothers with an intellectual disability who still had custody of all their children were compared to 17 mothers whose children were placed in care. Mothers who still had custody of their children were more involved in their community, were more satisfied with the services they received, had higher incomes, and younger children than mothers who had lost their children. No significant differences were found concerning the behaviour of their children, the mothers' health, adaptive behaviours, or the number of persons in their social network. The results suggest that services should then be offered to both mothers and children and be adapted as the children grow.
Barakat, L. P., & Linney, J. A. (1995, September). Optimism, appraisals, and coping in the adjustment of mothers and their children with spina bifida. Journal of Child and Family Studies, 4
Families of children with physical disabilities show substantial differences in the levels of adjustment of both the children and their parents. These differences result, in part, from the complex interplay of family and child adaptation resources, such as coping and social support. In order to identify factors which may differentiate levels of adjustment among families with children with physical disabilities, this study examined relationships among optimism, primary and secondary appraisals of and coping with child-related stressors, maternal psychological adjustment, and child adjustment in 29 families with a child with spina bifida without mental retardation and 28 comparison families with a nondisabled child. For the spina bifida group, primary appraisals were related to the use of avoidant coping strategies, and these coping strategies were related to maternal psychological adjustment and child internalizing behavior problems. No significant differences between the groups in terms of the nature of the relationships or in the levels of the variables were found with the exception that mothers of children with spina bifida were less optimistic than comparison mothers. These data support the importance of coping in understanding the psychological adjustment of mothers faced with a chronic stressor in the family.
Barber, G. (2008, July). Supporting pregnant women with disabilities. Practice Nursing, 19
Practice nurses have opportunities to support pregnant women with a disability in many circumstances. Gillian Barber explains what support and advocacy they may need.
Barker, L. T., Kirshbaum, M. et al. (1997). You may be able to adopt: A guide to the adoption process for prospective mothers with disabilities and their partners.
Berkeley: Through the Looking Glass.
This handbook is designed to prepare persons with disabilities for the adoption process along with agency and internet adoption resources. "As a woman with a disability you may feel that adoption is not really an option for you, because you fear that adoption agencies will discriminate against you on the basis of your disability...Dealing with adoption eligibility criteria can be frustrating, burdensome, time-consuming and intrusive. Indeed, some adoptive parents question whether eligibility criteria should exist at all...Women with significant disabilities attempting to adopt need to be prepared to address a wide range of barriers that they might encounter and decide ahead of time how strongly they feel about their decision to adopt. To be successful with the adoption option may mean being prepared to deal with a variety of barriers."
Barson R. (2006). Considering interventions for depression in reproductive age women in family planning programs.
Baltimore, MD: Women’s and Children’s Health Policy Center, Johns Hopkins Bloomberg School of Public Health. Retrieved August 14, 2006 from http://www.jhsph.edu/wchpc/publications/Consider
Considering Interventions for Depression in Reproductive Age Women in Family Planning Programs
explores family planning programs as possible sites for incorporating interventions related to depression, including screening and treatment, in women of reproductive age. The policy brief, produced by the Women's and Children's Health Policy Center at the Johns Hopkins Bloomberg School of Public Health, reviews the literature and presents ideas from the author's direct experience in the family planning field and from key informant interviews on interventions for depression within family planning settings. Topics include an overview of different types of depression, the prevalence of depression among women in the United States, selected consequences of depression at different points in the lifecourse, commonly used depression-screening tools, and the potential for integrating primary care services into family planning programs. Issues to consider, potential interventions, recommendations for future action, and a conclusion are also presented.
Bastos, O. M., & Deslandes, S, F. (2008, September). Raising children with mental disabilities: Mothers' narratives. Cad. Saúde Pública, 24
Technical advances in neonatology have increased the life expectancy of children with serious health problems. Many of these children experience developmental delay (mental disability) and require special care. The family must adapt to better provide for the child's needs. This study aimed to identify mothers' reactions and the obstacles they face to obtain what they consider the best treatment for their children. The study methodology was based on analysis of the mothers' narratives, drawing on medical anthropology and linguistics. The most typical plots in the narratives showed the impact of the diagnosis and the search for means to adapt to the child's care, as well as the difficulties encountered in the public health system to obtain what the mothers considered adequate care. The value ascribed to characters in the support network showed the importance of such support in these situations.
Baum, S., & Burns, J. (2007, July). Mothers with learning disabilities: Experiences and meanings of losing custody of their children. Tizard Learning Disability Review, 12
Women with learning disabilities are at high risk of losing their children, yet their experience of this process remains under-investigated. This study looks at the experiences of eight mothers with learning disabilities who lose custody of their children. In-depth, semi-structured interviews were conducted to explore their experiences. Findings suggest that concern about the women's parenting tend to be raised by other people, rather than the women themselves. Many of the women appeared not to understand the process of their children's removal, and said that they felt bullied and victimised by it. All blamed their violent partner or the social workers for what had happened, while some blamed their 'learning disabilities'. All commented that they had received inadequate support from both services and their families before and after their children were removed. All described intense feelings of loss. The psychological impact seemed to reinforce their feelings of powerlessness and brought the salience of their learning disabilities into focus. Service and clinical implications are addressed.
Bauminger, N., & Shulman, C. (2003, March). The development and maintenance of friendship in high-functioning children with autism: Maternal perceptions. Autism, 7
The current study investigated mothers' perceptions of the development of friendship in high-functioning children with autism and in typically developing children. Fourteen mothers in each group (autism, typical) completed the Childhood Friendship Survey regarding their children's friendships. Main results indicated that both groups (autism and typical) tended to have same-gender and same-age friendships. However, friendships of children with autism differ compared with typical children's friendships on number of friends, friendship duration, frequency of meetings, and type of activities. Half of the friendships in the autism group were mixed (friendship with a typically developing child). Mixed differed from non-mixed friendships in that mixed pairs met and played mostly at home, whereas non- mixed pairs met and played at school. Factors contributing to the development and formation of friendship in each group are discussed.
Bell, M., & Stoneman, Z. (2000, January). Reactions to prenatal testing: Reflection of religiosity and attitudes toward abortion and people with disabilities. American Journal on Mental Retardation, 105
To better understand factors associated with prenatal testing decisions, we asked individuals what they would do if through prenatal testing they discovered that they (or their partner) were carrying an affected fetus. Respondents were more uncertain about whether to continue the pregnancy when the fetus was diagnosed as having Down syndrome than when the fetus had spina bifida or hemophilia and less certain about continuing a fetus with spina bifida than one with hemophilia. There was modest support for the hypothesis that negative attitudes toward people with disabilities would be associated with an increased likelihood of choosing abortion. Religious affiliation was associated only with the decision concerning the fetus with hemophilia; church attendance was associated with the decisions concerning fetuses with all three diagnoses.
Bell, S. E. (2004). Intensive performances of mothering: A sociological perspective. Qualitative Research, 4
This article explores multiple identities and meanings of mothering by interpreting two narrative performances of mothering in the early 1970s. One performance is from a work of art by feminist Mary Kelly, Post-Partum Document (1983), the other from a research interview conducted in the early 1980s with a DES daughter. Both women perform versions of intensive mothering. The essay shows that moving between narratives produced in a research interview and a work of art enlarges the field of narrative analysis and fills in details about how intensive mothering is a historically specific and embodied practice.
Belling, C. (2005, September). The purchase of fruitfulness: Assisted conception and reproductive disability in a seventeenth-century comedy. In R. Garland-Thomson & M. S. Holmes (Eds.), Disability and medicine: Beyond the medical model [Special issue]. Journal of Medical Humanities, 26
The relationships between socioeconomic and biogenetic reproduction are always socially constructed but not always acknowledged. These relationships are examined as they apply to an instance of infertility and assisted reproduction presented in a seventeenth-century English play, Thomas Middleton's 1613 comedy, A Chaste Maid in Cheapside
. Middletons satirization of the effects of secrecy on the category of reproductive disability is analyzed and its applicability to our own time considered. The discussion is in four parts, focusing on: the attribution of disabled status to one member of the couple, the wife; the use of this attribution to protect the husband's reputation for sexual and reproductive health; the concealment of the nature of assisted reproduction; and the interests of the child conceived with such assistance.
Bennett, J. (2007). (Dis)ordering motherhood: Mothering a child with Attention-Deficit/Hyperactivity Disorder. Body & Society, 13
“Although this article employs Foucault’s archaeology to discuss the emergence of ADHD, the main aim of the article is to use Foucault’s genealogy and feminist epistemologies to highlight and examine the interplay between medical discourses and mothering subjectivities. Mothering is such an individualizing discourse, which is shot through with relations of power. Consequently when things go well, both mother and child are able to adopt favourable subject positions; however, when things go wrong the opposite applies. In many instances mothers of ADHD children are often positioned and judged in accordance with their child’s behaviour” (p. 97).
Betterton, R. (2002, December). Prima gravida: Reconfiguring the maternal body in visual representation. Feminist Theory, 3
Over the past decade, representations of pregnant embodiment, foetal imagery and the maternal body have become the subject of intense feminist investigation across fields as diverse as philosophy, science and cultural studies. This body of work represents a sustained intervention in the politics of reproduction and the politics of representation that builds on earlier feminist discourses on motherhood. Within this article, I want to address the limits of, and ruptures in, the representation of the maternal body in relation to particular examples of visual art practice. The article focuses on four pregnant figurations that seem to constitute certain limit points in the representation of maternal embodiment: the 'phantom' pregnant body; the elderly prima gravida; the pregnant woman with disabilities; and young women undergoing abortion. My argument is that, in these particular visual texts, 'being pregnant' is represented as an unnatural rather than a natural state and as a cultural rupturing of feminine and maternal norms. This seems to offer a useful starting point from which to interrogate the relations between prevailing discourses around the maternal subject and the unstable subject of pregnancy.
Betterton, R. (2006, February). Promising monsters: Pregnant bodies, artistic subjectivity, and maternal imagination. In R. Kukla (Ed.), Maternal Bodies [Special Issue]. Hypatia, 21
This paper engages with theories of the monstrous maternal in feminist philosophy to explore how examples of visual art practice by Susan Hiller, Marc Quinn, Alison Lapper, Tracey Emin, and Cindy Sherman disrupt maternal ideals in visual culture through differently imagined body schema. By examining instances of the pregnant body represented in relation to maternal subjectivity, disability, abortion, and "prosthetic" pregnancy, it asks whether the "monstrous" can offer different kinds of figurations of the maternal that acknowledge the agency and potential power of the pregnant subject.
Blackford, K. A. (1993). Erasing mothers with disabilities through Canadian family related policy. Disability, Handicap & Society, 8
Blackford explores family policy in Canada as it pertains to mothers with disabilities. She argues that Canadian public policy claims to empower disadvantaged groups, and while women with disabilities who are mothers fit into this group, the author shows that they are still, in fact, discriminated against. The author demonstrates through federal, provincial, and municipal government policies that inadequate accommodation for women with disabilities denies them the rights and entitlements due to all Canadian citizens.
Blackford, K. A., Richardson, H., & Grieve, S. (2000, October). Prenatal education for mothers with disabilities. Journal of Advanced Nursing, 32
Prenatal nurse educators are well prepared to meet the learning needs of many expectant mothers. But how prepared are they to meet the learning needs of mothers with disabilities? To answer this question, eight mothers with various chronic illnesses located in north-eastern Ontario, Canada were asked to describe their maternity experiences. Given the small convenience sample and exploratory nature of the study, a qualitative content analysis was done. The mothers' reports described interaction with a variety of health professionals. This analysis focuses on findings specific to nurses who provide prenatal education. In general, mothers reported they had received insufficient, inappropriate information, especially about their pregnancy and chronic illnesses. The mothers thought that nurses doubted the ability of women with disabilities to be decision-makers or responsible and 'proper' mothers. Suggestions by disabled mothers for quality care in prenatal education are described. A more emancipatory approach to preparing nurses for practice as prenatal educators is recommended. Such an approach can reduce the barriers associated with power differences between women with disabilities as 'learners' and their nurse 'teachers'.
Blum, L. M. (2007). Mother-blame in the Prozac nation: Raising kids with invisible disabilities. Gender & Society, 21
Based on in-depth interviews and fieldwork, this article examines mothers raising kids with invisible, social/emotional/behavioral disabilities to refine feminist theories of mother-blame. The mother-valor/mother-blame binary holds mothers responsible for families and future citizens, maintaining this "natural" care at the center of normative femininity. The author explores how mothers raising such burdensome children understand their experiences and makes three arguments: (1) Fewer mothers are blamed for causing their child's troubles in an era of "brain-blame," but more are blamed as proximate causes if they do not make unrelenting efforts, paralleling "concerted cultivation," to resolve them; (2) such mothers often exceed concerted cultivation, as they seize authority, as vigilantes, within educational and medical systems in the midst of turf wars, cost containment, and a resulting proliferation of medication treatments; and (3) this maternal speedup holds mothers accountable for feminizing ties to sons, for policing gender boundaries while policing their own feminine care. In sum, mothers raising invisibly disabled kids may represent the model of maternal valor for an era of public stinginess and extensive medicalization.
Blumberg, L. (1994). The politics of prenatal testing and selective abortion. Sexuality and Disability, 12
Blumberg addresses issues regarding the decision of women to have a child with a disability. She discusses the current trend toward prenatal testing and suggestions by doctors to about fetuses with disabilities. The author asserts that a key issue in the expectation that fetuses with disabilities should be aborted is societal attitudes toward women with disabilities and disability in general.
Booth, T., & Booth, W. (2003, June). In the frame: Photovoice and mothers with learning difficulties. Disability & Society, 18
This paper presents the results of a photovoice project involving mothers with learning difficulties. Photovoice is a technique that challenges the established politics of representation by putting people in charge of how they document their own lives. The authors describe how the project was carried out and the problems they encountered. Analysis of the content of the mothers' photo albums in the context of their own personal stories throws light on both their individual lives and their collective experience. The results challenge discriminatory views of the women as different mums.
Booth, T., & Booth, W. (2006). The uncelebrated parent: Stories of mothers with learning difficulties caught in the child protection net. British Journal of Learning Disabilities, 34
This paper presents the stories of three mothers with learning difficulties whose children have been involved in care proceedings. Drawing on the example of the legendary interviewer, Studs Terkel, the authors let the mothers describe their experiences of the child protection system in their own words. From out of their intensely personal accounts comes a political narrative about the role of the state in the policing of marginalized and vulnerable families.
Borum, V. (2006). Reading and writing womanist poetic prose: African American mothers with deaf daughters. Qualitative Inquiry, 12
Poetic prose--a creative, novel, qualitative technique developed by the author--is used to present in a multivocal, interactive, and interwoven style the findings of in-depth, thematic interviews with 12 African American mothers with deaf daughters. This style of interweaving the voices of participants in a creative prose is indicative of African American cultural and oral tradition. It permits and deepens the readers ability to emotionally and spiritually connect with experiences and emotions of African American mothers with deaf daughters. Womanism/Black feminism offers a powerful conceptual framework for organizing and evoking these experiences of women as mothers and girls as daughters.
Boucher, J. (2004, March). Ultrasound: A window to the womb
?: Obstetric ultrasound and the abortion rights debate. In J. Rendell (Ed.), Body Projects: Medicalized Bodies, Embodied Lives [Special issue]. Journal of Medical Humanities, 25
This paper explores the rhetoric of obstetric ultrasound technology as it relates to the abortion debate, specifically the interpretation given to ultrasound images by opponents of abortion. The tenor of the anti-abortion approach is precisely captured in the videotape, Ultrasound: A Window to the Womb
. Aspects of this videotape are analyzed in order to tease out the assumptions about the (female) body and about the access to truth yielded by scientific technology (ultrasound) held by militant opponents of abortion. It is argued that the ultrasound images do not offer transparent confirmation of the ontological status of the embryo and fetus. Rather, the “window” of ultrasound is constructed through a complex combination of visual and verbal devices: ultrasound images, photographic images, verbal argument, and emotional appeal.
Bourke-Taylor, H., Howie, L., & Law, M. (2010, April). Impact of caring for a school-aged child with a disability: Understanding mothers' perspectives. Australian Occupational Therapy Journal, 57
(2), 127-136. Aim:
Children with a disability are reliant on a capable, healthy and well-resourced carer. Most often the child's mother provides the care that ensures the child's health, service access and community integration are attended to successfully. Through in-depth interviews with mothers and professionals, this study explores issues that challenge the mother's performance in her very important role as a caregiver. Method:
Qualitative methodology(n = 8)resulted in verbatim transcriptions that were analysed and categorised, and common themes were derived. Results:
Participants identified a multitude of challenges related to issues surrounding the child, maternal characteristics, the family, services and the community. Emotional distress and mental health issues were reported. Conclusion:
Many aspects of caregiving can be relentless and challenging. Occupational therapy clinical implications aimed at supporting mothers and their children are discussed.
Bower, A. M., & Hayes, A. (1998, September). Mothering in families with and without a child with disability. International Journal of Disability, Development and Education, 45
This paper describes some features of a study which compares and contrasts mothers' perceptions of their family life in three different family environments, those without a child with disability and those families who live with a child with an intellectual or physical disability. All families have children in the middle childhood period allowing the mothers to reflect on earlier experiences and changes in their family life. Mothers' psychological characteristics are explored in terms of the coping resources they utilise when meeting stressful life situations in their family and how their personal resilience and vulnerability is related to these individual coping resources.
Brackis-Cott, E., Mellins, C. A., Dolezal, C., & Spiegel, D. (2007). The mental health risk of mothers and children: The role of maternal HIV infection. The Journal of Early Adolescence, 27
Rates of mental health problems in mothers and children in families affected by maternal HIV as compared to those not affected by maternal HIV but living in similar inner-city, low-SES, primarily ethnic-minority neighborhoods were examined. In addition, correspondence between mother and child mental health was explored. Interviews were conducted with 220 mother/child dyads regarding symptoms of depression and anxiety. Participants included HIV-negative early adolescents (ages 10 through 14 years) and their mothers, approximately half of whom were HIV-positive. Overall, mothers with HIV exhibited more depressive symptomatology than uninfected mothers. There were no significant differences, however, in depressive symptomatology between children of mothers who were HIV-positive and children of mothers who were HIV-negative. Among families directly affected by HIV, mothers who disclosed their status to their children endorsed greater depressive symptomatology than those who did not disclose and children who had been disclosed to were more likely to score in the clinically depressed range on the Child Depression Inventory than those who did not know. Latina mothers and their children were at increased risk for both depression and anxiety symptoms, particularly in families where the mother was not born in the United States. The results corroborate previous findings with HIV-infected women that highlight the mental health needs of HIV-infected mothers and their children, particularly children that know their mothers' status.
Brady, S. M. (2001). Sterilization of girls and women with intellectual disabilities: Past and present justifications. In L. Chenoweth, & S. Cook (Eds.), Violence against women with disabilities [Feature issue]. Violence Against Women, 7
This article describes findings from empirical research examining sterilization applications for minors made to the Family Court of Australia between 1992 and 1999. Original materials and written reports from "experts," family members, and judicial officers are used to highlight the dominant discourse and themes. These are compared with historical characterizations of young women with disabilities used during the notorious eugenics period in the first half of the 20th century. The new ways of justifying sterilization use the sanitized language of "best interests," silencing constructionist approaches to disability and gender issues. The new ways are reminiscent of the old ways of discrimination, prejudice, and violation.
Brandon, P. D. (2000, December). Child care utilization among working mothers raising children with disabilities. Journal of Family and Economic Issues, 21
Using data from the Survey of Income and Program Participation, this study investigates factors associated with utilization of child care among working mothers raising children with disabilities. Results provide a national-level description of the use of nonparental child care among working mothers raising children with disabilities. Multivariate analyses show that the hours of day care or relative-provided child care used by mothers raising children with disabilities are influenced by demographic and economic factors and by the specific nature of the childhood disability. The study also finds that a child's disability status is less important in a mother's decision to enter the labor force than other factors, such as the mother's own disability status.
Brandon, P. D., & Hogan, D. P. (2004, August). Impediments to mothers leaving welfare: The role of maternal and child disability. Population Research and Policy Review, 23
This research examines the relationship between disabilities in families and exits from welfare. Controlling for variations in characteristics known to be associated with welfare exits, this study investigates and documents that specific configurations of disabilities in families are also strongly associated with reduced rates of welfare exits. The impact of a child with a disability on welfare exits is similar to the mother's own disability, with an impact equivalent in magnitude to minority status. The presence of a child with a disability limits the chances that a mother with disability will leave welfare. Our findings add to the literature on welfare dependency and have implications for welfare reforms that emphasize work, self-sufficiency, and reducing poverty.
Bright, R. W., & Wright, J. M. C. (1986). Community-based services: The impact on mothers of children with disabilities. Journal of Intellectual & Developmental Disability, 12
Harsh economic realities in welfare service provision, coupled with current professional and administrative ideologies have met at the same point in time. These ideologies are based on the fostering of community-oriented approaches to the delivery of services for people with disabilities. However, in the implementation of such a model, service providers must be aware of the underlying assumptions about the status of women in society. Consideration needs to be given to current feminist ideologies about women's roles so that mothers of children with a disability have available to them the same opportunities that exist for other women in our society.
Bromley, J., Hare, D. J. Davison, K., & Emerson, E. (2004, December). Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8
Parents of children with autistic spectrum disorders (ASDs) are more likely to experience serious psychological distress than parents of children with other developmental disabilities. To examine the impact of a range of factors on psychological wellbeing, interviews were undertaken with 68 mothers of children with ASDs to explore aspects of social support, mental health status and satisfaction with services. Findings indicated that over half of mothers screened positive for significant psychological distress and that this was associated with low levels of family support and with bringing up a child with higher levels of challenging behaviour. Mothers were more likely to report lower levels of support if they were a lone parent, were living in poor housing, or were the mother of a boy with ASD. The study also investigated areas of useful support and areas of unmet need, the latter including care breaks and advice needs.
Brookes, A. (2001, June). Women's voices: Prenatal diagnosis and care for the disabled. Health Care Analysis, 9
The development and implementation of prenatal diagnosis has changed the experience of pregnancy for many women. How women make decisions about prenatal diagnosis PD is an important question that challenges us both individually and as a community. The question of care is central to many women's decision-making process. How much care a child will require, how much care a woman feels confident to provide, and the level of care available for children with genetic conditions and families from their communities all impact on women's decisions to undertake prenatal diagnosis as well as how to use the information available from testing. Interviews with women making these decisions explored, among other things, the role that caring and access to care played in women's ethical deliberations. Before PD can widen women's reproductive choices and counter criticisms that its use is eugenically oriented, the central role that provision of, and access to, care holds for participants in PD programmes must be acknowledged and addressed.
Bryant, L., Hewison, J. D., & Green, J. M. (2005, May). Attitudes towards prenatal diagnosis and termination in women who have a sibling with Down's syndrome. Journal of Reproductive and Infant Psychology, 23
This study surveyed the views of 78 women who had a sibling with Down's syndrome towards using prenatal diagnosis and termination. Other data were collected, including participants' perceptions of the difficulty of caring for a child with Down's syndrome, perceived familial approval of selective termination, and the quality of the sibling relationship. Fifty-four per cent of respondents said they would use diagnostic tests for Down's syndrome in a future pregnancy, 37% would not, and 9% were unsure. In contrast, 33% would consider terminating a pregnancy for Down's syndrome, 53% would not consider termination, and 14% were unsure. Logistic regression showed that the perceived difficulty of caring for a child with Down's syndrome and perceived parental approval of selective termination were the strongest overall predictors of both attitudes. However, women who were younger than their affected sibling were more likely to want to use prenatal diagnosis, and a generally favourable attitude towards abortion predicted a favourable view towards terminating a pregnancy for Down's syndrome. In general, a positive picture emerged of having a sibling with Down's syndrome although around one-third of the women viewed the impact on themselves and their family as negative and this was reflected in their attitudes towards prenatal testing and termination.
Burton, P., Lethbridge, L., & Phipps, S. (2008, June). Children with disabilities and chronic conditions and longer-term parental health. In J. F. Tomer (Ed.), Behavioral Dimensions of the Firm [Special Issue]. Journal of Socio-Economics, 37
This paper uses panel data from the Statistics Canada National Longitudinal Survey of Children and Youth (1994–2000) to study the implications of parenting a child with a disability or chronic condition for subjective assessments of parental health. We find mother's health to be negatively affected, particularly if the disability is longer-term. Within families, the wife's health deteriorates relative to her husband's when they are parenting a child with a disability. These results are consistent with Akerlof and Kranton's [Akerlof, G., Kranton, R., 2000. Economics and identity. The Quarterly Journal of Economics 105
(3), 715–753] arguments that ‘identity’ is an important determinant of both behaviour and well-being. For parents of children with disabilities, the behaviour associated with a traditional ‘good mother’ identity (e.g., care-giving) appears to have more adverse health consequences than the behaviour associated with a ‘good father’ identity (e.g., breadwinning).
Button, S., Pianta R. C., & Marvin R. S. (2001, November). Mothers’ representations of relationships with their children: Relations with parenting behavior, mother characteristics, and child disability status. Social Development, 10
Representational models of mother-child relationships were assessed through interview for 112 mothers of children ages 14 to 52 months. Fifty-eight (51.8%) children had a diagnosis of cerebral palsy, 19 (17%) were diagnosed with epilepsy, while the remaining 35 (31.3%) had no diagnosis. Relations were examined between dimensions of representations (compliance, achievement, secure base, enmeshment, worry, pain) and maternal age, education and stress; diagnostic group and child developmental status; and mother’s behavior with the child in a problem-solving task. Mothers for whom boundary violations were represented were also less focused with child achievement and experienced more worry and pain in the relationship. More severe disability status was associated with less compliance and more pain in representations. Longer time since diagnosis was positively correlated with painful representations. Representations were unrelated to child gender, child age, maternal education or age, or parenting stress. With educational level controlled, mothers’ support for the child and positive affect in a problem-solving task were negatively related to representations of worry about the child’s future. Boundary concerns were predictive of mothers’ pressuring behavior in the problem-solving task. Findings suggest representations are related to caregiving behavior apart from other maternal characteristics, and that mothers’ representations reflect variability in their children.
Buzzanell, P. M. (2003, September). A feminist standpoint analysis of maternity and maternity leave for women with disabilities. Women & Language, 26
Maternity and maternity leave do not simply mean pregnancy (or adoption) and the time taken from work to recover from childbirth/adoption. Instead, these processes can be experienced in a variety of ways that are simultaneously empowering and disempowering for the women who gain access to specialized knowledges through these events and discussions with others. In this study, I examine one woman's discourse about her pregnancy and maternity leave. "Julianna's" standpoint emerges as a tension-filled, contradictory, and ironic statement of what life entails for a pregnant woman with disabilities in an able-bodied world. As she presents her story, she displays the ways in which she pieced together data and insights. Feminist standpoint analyses of her discourse and practices can open opportunities for further explorations of policies and practices adapted to different women's life conditions.
Campion, M. J. (1990). The baby challenge: A handbook on pregnancy for women with a physical disability.
London & New York: Routledge.
This is an informative resource that suggests practical ways for women with physical disabilities to best prepare themselves for pregnancy and motherhood. Also included are personal accounts from mothers with disabilities as well as a detailed source list for further health care information.
Carpenter, L., & Austin, H. (2007). Silenced, silence, silent: Motherhood in the margins. Qualitative Inquiry, 13
This project explores the experiences of women who mother children with ADHD. The authors use the metaphor of the text and the margin. The text is the "motherhood myth" that describes a particular sort of "good" mothering. The margin is the space beyond that text. This marginal space is inhabited by some or all of the mothers they spoke with, some or all of the time, as they fail to be recognized by the text. They explore the many sorts of silence, whether imposed or "strategic choice," that disable these women by segregating and isolating them. They also use the metaphor of trouble. They explore the troubling work these mothers do as they negotiate motherhood on the borders of that myth. The troubling work is itself troubled—as neither strategic silence nor strategic unsilence is without its risk, and both at times reinscribe the very mythology that denies these women.
Carrington, S., & Graham, L. (2001, March). Perceptions of school by two teenage boys with Asperger syndrome and their mothers: A qualitative study. Autism, 5
This qualitative study aimed to develop an understanding of the challenges faced by teenage boys with Asperger syndrome and their mothers. A case study approach was used to collect data from two 13-year-old boys who have Asperger syndrome and their mothers in Queensland, Australia. Data were collected through the use of semi- structured interviews. The words of the boys and their mothers provide a valuable insight into the personal experiences and feelings of the participants. An inductive approach to data analysis identified four themes: (1) developmental differences; (2) problems associated with the general characteristics of Asperger syndrome (i.e. communication and social difficulties, restricted range of interests, a need for routine); (3) stress; and (4) ‘masquerading’. The first three themes relate strongly to the current literature, but the emergence of masquerading is of particular interest in developing a fuller understanding of the experiences of individuals with Asperger syndrome at school.
Carter, A. S., de L. Martínez-Pedraza, F., Gray, S. A. O. (2009, December). Stability and individual change in depressive symptoms among mothers raising young children with ASD: Maternal and child correlates. Journal of Clinical Psychology
Mothers raising children with Autism Spectrum Disorders (ASD) evidence elevated depressive symptoms, but symptom stability has not been examined. Mothers (N=143) of toddlers with ASD (77% boys) were enrolled and assessed when their children were 18 to 33 months old and followed annually for 2 years. Multilevel modeling revealed no significant change in group depressive symptom level, which was in the moderately elevated range (Intercept=13.67; SE=.96). In contrast, there was significant individual variation in change over time. Child problem behaviors and delayed competence, maternal anxiety symptoms and angry/hostile mood, low parenting efficacy and social supports, and coping styles were associated with depression severity. Only maternal anxiety and parenting efficacy predicted individual change. Many mothers do not appear to adapt, supporting the need for early intervention for maternal well-being.
Center for Reproductive Rights. (2002, January). Briefing report: Reproductive rights and women with disabilities: A human rights framework.
New York: Author. Retrieved July 20, 2005 from http://www.crlp.org/pdf/pub_bp_disabilities.pdf
"This briefing paper proposes a human rights framework for considering the reproductive rights of women with disabilities, taking into consideration international human rights laws and instruments and global consensus documents." This report is also available in Spanish on the CRR web site: http://www.reproductiverights.org/esp_pub_bo_tmb.html
Chen, E. A., & Schiffman, J. F. (2000, April). Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities. Journal of Genetic Counseling, 9
Few studies have been published on the attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis. Articles in the lay press and social science literature on this topic, mainly written by disability rights activists and advocates, imply opposition to prenatal diagnosis and the field of clinical genetics by the physically disabled population. In this study, 15 adults with physical disabilities were interviewed regarding their attitudes toward genetic counseling and prenatal diagnosis. Genetic counseling and prenatal diagnosis were generally viewed favorably by this sample of the disability community. Only a small percentage of the sample perceived genetics to be eugenic. Implications for genetic counseling and future research are discussed.
Cho, J., Miles, M. S., Holditch-Davis, D., & Belyea, M. (2009, Febrfuary). Effect of gender on the interactions between mothers and their medically at-risk infants. Journal of Reproductive and Infant Psychology, 27
This study examined effects of gender on interactions between mothers and their medically at-risk infants: 108 premature infants, 67 medically fragile infants, and 83 infants seropositive for HIV. Systematic observation and the HOME Inventory were used to describe the mother-infant interaction. General Linear Mixed Models were used to determine whether the effect of gender was longitudinally related to the interactions between mothers and each sample of medically at-risk infants after controlling for maternal demographics. No gender-differentiated mother-infant interactions were found; however, premature infants and infants seropositive for HIV showed less negativism, while medically fragile infants showed more social behaviours over time. Mothers of premature and medically fragile infants were increasingly restrictive to their infants, while HIV-positive mothers did not show this tendency. Mothers who were older, had more years of education, and married were more attentive and less restrictive to their infants than mothers who were younger, had fewer years of education, and unmarried. In addition, there were three significant interactions. Married mothers with higher education of medically fragile infants showed more attention.
Cohen, P. N., & Petrescu-Prahova, M. (2006, August). Gendered living arrangements among children with disabilities: Evidence from the 2000 census Journal of Marriage and Family, 68(
Using data on disabilities from the 2000 Census, we found a consistent pattern of living arrangements that leaves children (aged 5 – 15 years) with disabilities living disproportionately with women. Children with disabilities are more likely to live with single parents, and especially their mothers, than are other children. Further, those who do not live with either biological parent are more likely to live in households headed by women than are other children. The results suggest that gendered living arrangements among children with disabilities are a neglected aspect of inequality in caring labor, which is an underpinning of gender inequality in general.
Collins, C. (1999). Reproductive technologies for women with physical disabilities. Sexuality and Disability, 17
Issues regarding reproductive technologies for women with physical disabilities are discussed. Consideration is given to birth control, motherhood, access issues, the artificial insemination process, prenatal and genetic testing, and the issue of choice. An interview with a woman with a physical disability, who is a feminist and a disability rights activist, about her experience with reproductive technologies, provides a personal perspective for this discussion.
Conley-Jung, C., & Olkin, R. (2001). Mothers with visual impairments who are raising young children. Journal of Visual Impairment and Blindness, 95
Study examining the experiences of women with visual impairments during the transition to motherhood. Data are from interviews with 42 mothers who were blind or low vision. Topics include their ways of managing tasks, their concerns, and their access to social support and resources.
Corbett, C. J. (2002, Fall). Sex, disability and motherhood: Access to sexuality for disabled mothers. Disability Studies Quarterly, 22
(4), 81-101. Retrieved March 2, 2005 from http://www.dsq-sds.org/_articles_pdf/2002/Fall/dsq_2002
There is limited research into the sexual lives of mothers, particularly mothers with disabilities. This article examines the barriers to sexuality facing mothers with disabilities. These barriers include: stereotypes that disabled mothers are not sexual, lack of resources for essential aspects of parenting, and difficulty in creating time for personal and private adult activities. Recommendations are presented based on the experiences of disabled mothers.
Craig, G. M., & Scambler, G. (2006, March). Negotiating mothering against the odds: Gastrostomy tube feeding, stigma, governmentality and disabled children. Social Science & Medicine, 62
Using the findings of a small-scale qualitative investigation based on in-depth interviews with mothers attending a tertiary paediatric referral centre in London, this paper explores professional and parental discourses in relation to gastrostomy tube feeding and disabled children. Detailed accounts are given of women's struggles to negotiate their identities, and those of their children, within dominant discourses of mothering and child-centredness. Constructions of feeding practices as coercive conflict with normative expectations of ‘good mothering’ and the ‘idealised autonomous’ child. Although notions of ‘stigmatised identities’ featured in women's accounts of feeding children, both orally and by tube, stigma fails to explain why mothers are rendered culpable within expert discourses. Prevailing theories of stigma and coping are interrogated and judged to be more descriptive than explanatory. Felt stigma is posited as an aspect of governmentality.
Cronin, A. F. (2004, January/February). Mothering a child with hidden impairments. The American Journal of Occupational Therapy, 58
When a mother has a child with a chronic impairment, the occupational demands of mothering extend to address the specialized needs of that child. This research explores how the type of hidden impairment in a child influences family routines and occupations. This qualitative study consisted of interviews with 22 mothers of children with attention deficit hyperactivity disorder (ADHD), a behavioral disorder, and 22 mothers of children with cystic fibrosis, a physical disorder. Open-ended questions were used to explore family demands, resources, time use, routines, concerns, and support. The transcripts of these interviews were analyzed in terms of consistency with existing literature on parenting the child with hidden disability, and for emergent themes. In this analysis the experiences of mothers of children with cystic fibrosis were consistent with research findings on other chronic conditions, with these mothers reporting that family provides them with extensive physical and emotional support. Although mothers of children with cystic fibrosis reported a persistent emotional sorrow, they felt they were able to "normalize" their daily routines. In contrast, mothers of children with ADHD reported little family support, high perception of child-related demands, and less confidence in their success in mothering these children. In describing their daily routines, these mothers often stated that there was no such thing as a "normal" day. They felt constantly "on alert" and did not feel that they had "normal" routines. Based on this study, mothers of children with ADHD felt distress because their child did not easily conform to social standards, and were likely to express exhaustion in their role as "mother." The pattern of responses offered by these participants differs significantly from that of the participants whose children have cystic fibrosis, and from the usual pattern of coping with chronic childhood disability documented in the literature.
Cuskelly, M., Pulman, L., & Hayes, A. (1998, December). (1998, December). Parenting and employment decisions of parents with a preschool child with a disability. Journal of Intellectual & Developmental Disability, 23
Twenty couples, each with a young child with a disability, and 20 matched couples with a normally developing child were interviewed about their current employment status, their reasons for their status, and their attitudes towards parenting. There was a disproportionate number of mothers of a child with a disability in part-time employment in comparison to the mothers of children who were developing normally. Mothers' reasons for their employment situation differed between the two groups, with the medical needs of the child with the disability being an important consideration. There were no differences between the groups with respect to their beliefs about parenting. Domestic and childcare responsibilities did not differ between the two groups with mothers carrying most of the burden in families in which there was a child with a disability and also in families where all children were developing normally.
Dale, E., Jahoda, A., & Knott, F. (2006, September). Mothers' attributions following their child's diagnosis of autistic spectrum disorder: Exploring links with maternal levels of stress, depression and expectations about their child's future. Autism, 10
Although the impact of autism spectrum disorders (ASDs) on the family is well recognized, the way mothers attempt to make sense of the diagnosis is largely unexplored. However, in other disabilities, attributions have been shown to predict a variety of outcomes including maternal wellbeing and engagement in treatment. Using Weiner's (1985) three-dimensional model, 16 mothers were interviewed to examine the nature and impact of their beliefs about their child's ASD using semi-structured interviews and measures of depression, parenting stress and expectations for their child's future. The findings suggested that mothers made a diverse and complex range of attributions that were consistent with Weiner's dimensions of locus of cause, stability and controllability. The nature of their attributions reflected particular difficulties associated with ASDs, such as uncertainties regarding cause and prognosis. Taking account of mothers' search for meaning will better enable professionals to support families following diagnosis.
Davis, A. (1987). Women with disabilities: Abortion and liberation. Disability, Handicap & Society, 2
(3), 276 284
In this article Alison Davis argues that the women's movement, which ideally should provide the perfect vehicle for women with disabilities to fight for and protect their rights, has failed to take this group of women into account. The author further argues that by supporting abortion on the grounds of a disability, the women's movement has, in fact, denied women with disabilities an identity as equal human beings, worthy of respect and has called into question the fundamental societal rights of people with disabilities. Davis, who has spina bifida, describes how she changed her mind about abortion, from supporting abortion to being against it. Instead of seeing reproductive rights and disability rights as compatible, she argues that these are incongruous. She also argues that abortion is far from being a right, instead abortion underlines women's oppression and is counter-productive to women in general, and to women with disabilities in particular. This article takes a different perspective than most other available writing on these issues and should therefore be of interest to those who would like to review different arguments around the issues of reproductive rights and disability rights.
Dhar, J. P., Essenmacher, L. M., Ager, J. W., & Sokol, R. J. (2005, October). Pregnancy outcomes before and after a diagnosis of systemic lupus erythematosus. American Journal of Obstetrics and Gynecology, 193
(4), 1444-1455. Objective:
The purpose of this study was to evaluate pregnancy outcomes before and after diagnosis of lupus. Study design:
Successive selection criterion applied to 148 lupus and 78,905 non-lupus pregnancies, generated 3 groups: lupus group, 84 pregnancies (not-yet-diagnosed group, 15 women; already-diagnosed group, 69 women), and control group, 51,000 pregnancies. Three-way analysis of variance and the chi-squared test were used for analyses. Results:
Stillbirth outcome was increased in the lupus group compared with the control group (odds ratio, 4.84 [95% CI, 1.72,11.08]); the not-yet-diagnosed group (odds ratio, 9.89 [95% CI, 1.09,42.63]), and the already-diagnosed group (odds ratio, 3.85 [95% CI, 1.02,10.31]). Considering >1 pregnancy per patient would have overestimated the stillbirth rate. Stillbirth risk was increased significantly in severe maternal disease that was marked by central nervous system involvement. The already-diagnosed group had more hypertensive complications (P = .001 and .0001). Both lupus groups showed a significantly greater proportion of preterm births (P = .03), growth restriction (P = .019), and infants in the very low birth weight category (P = .021) compared with the control group. Conclusion:
Poor fetal outcomes are seen in pregnancies that are complicated by lupus, even before clinical appearance of disease, which supports a predisease state.
DAWN Canada. (n.d.). The only parent in the neighbourhood: Mothering and women with disabilities.
North York, ON: Author. Retrieved March 16, 2005 from http://www.dawncanada.net/mother.htm
This position paper is based on the results of DAWN Canada's 1988 survey of women with disabilities. The project included the distribution of 1,200 questionnaires, which were returned by 245 women with a variety of disabilities and meetings with approximately fifty of the respondents who volunteered to be interviewed. Through this project and this paper, DAWN Canada hopes to increase awareness of issues affecting mothers with disabilities and to point out areas for further discussion and research.
DAWN Ontario. (n.d.). Women with disAbilities & parenting: Plain language factsheet.
North Bay, ON: Author. Retrieved March 15, 2005 from http://dawn.thot.net/wwd_parenting.html
A brief discussion of parenting for women with disabilities, focusing on attitudes, counseling, information, support services, transportation, reproductive technologies, and resources. DAWN Ontario has many other publications concerning parenting and women with disabilities available.
Demasio, K., & Magriples, U. (1999). Pregnancy complicated by maternal paraplegia or tetraplegia as a result of spinal cord injury and spina bifida. In S. Welner (Ed.), Women’s health and gynecological care [Special issue]. Sexuality and Disability, 17
Article on obstetrical issues related to pregnancy in women with paraplegia or quadriplegia resulting from spinal cord injury (SCI) or spina bifida (SB), including clinical management issues in the prepartum, interpartum (labor and delivery), and postpartum periods.
de Melo-Martin, I., & Hanks, C. (2001). Genetic technologies and women: The importance of context. Bulletin of Science, Technology & Society, 21
Bioethicists, like many other academics, have a tendency to try to make things general and simpler by eliminating context. Particulars, such as race, economic class, and gender, often seem to be lost in this ocean of generality and abstraction. But in losing them, we are neglecting the analysis of serious moral problems and, with it, the possibility of offering some kind of solution to such problems. This article argues that particulars do matter very much. We will focus our attention here on gender. We will argue that ignoring questions of gender when evaluating genetic technologies is seriously problematic because it might lead to further injustices against women. Proceeding with a noncontextual understanding of genetic technologies will likely disregard the unjust ways in which the health care system treats women, as well as the ways in which genetic technologies impose extra burdens on them.
Disability and motherhood
[Video]. (1994). Princeton, NJ: Films Media Group.
Many women with disabilities who have children find that they face deep-seated prejudice that takes no account of their competence to assume parental responsibility, but assumes instead that their children will be raised improperly or abnormally. Lydia Thomas, a television presenter, wheelchair user, and mother, thinks that while there are still difficulties, attitudes have changed substantially since she was a child. Cathy Rafferty, who has cerebral palsy, discovered that when she fainted during pregnancy, an ER nurse rudely questioned why her doctor "let her get in this condition." Ellen Blackman, who is blind, felt that other mothers in the maternity hospital watched "this woman with the big bump and the white stick" and felt the need for a private room so she could learn to care for her baby away from the intrusive gaze of others. The program examines the experiences of these three mothers with disabilities, as well as public attitudes toward the combination.
Dixon, A. N., & Gatchel, R. J. (1999, September). Gender and parental status as predictors of chronic low back pain disability: A prospective study. Journal of Occupational Rehabilitation, 9
This study investigated the relationship between chronic low back pain and various psychosocioeconomic factors, especially gender, that have been found significant in previous research. A cohort of 504 acute low back pain patients was initially evaluated and followed via a structured telephone interview at six months and one year after the evaluation in order to assess return-to-work and compensation status. Overall, the results demonstrated that the individuals who did not return to work were more likely to be female, single with children, and who have received compensation for their injury. These findings further document that single working mothers are at greater risk for developing chronic medical problems.
Dixon, D. P. (2008, Summer). Informed consent or institutionalized eugenics? How the medical profession encourages abortion of fetuses with Down syndrome. Issues in Law & Medicine, 24
Many women are unprepared to make prenatal decisions about fetuses diagnosed with Down Syndrome because of societal pressures to have "normal" children, a negative view of persons with disabilities by many in society, a fear of legal liability by those in the medical community, the lack of genuine informed consent before undergoing genetic testing and abortion, and the failure of non-directive pre-abortion counseling in the medical community. Moreover, medical professionals fail to communicate correct and unbiased information before and during the genetic screening, diagnostic testing, and abortion decision-making process. This article addresses the contributing factors and causes that ultimately lead to a lack of informed consent and a very high abortion rate for fetuses diagnosed with Down Syndrome.
Drakes, O. (1984, March). Spina bifida and motherhood. Special Education: Forward Trends, 11
Two women with spina bifida, a disability in which the spinal cord and nerves are damaged, gave birth to healthy babies. The article points out the need to provide young girls having this condition with information and counseling regarding sexual relationships, parenthood, and child rearing.
Dransfeld, R. (2003). Mothers of courage
[Film]. Boston: Fanlight Productions.
This insightful video is a tribute to dedicated mothers and fathers throughout North America who fight and organize for their children to get the medical and social services they need.
Bethany was born with hydrocephalus. At nine years old, she has been diagnosed with cerebral palsy, autism, and severe visual defects as well. Yet she appears to be a happy, loving child, who is coping well both at home and in her mainstreamed classroom. To get to this point, however, took years of heroic effort on the part of her parents, especially her mother: "I can't even count the fights anymore," Marlene says today. In the first years, she didn't even know that government services were available to Bethany; she found out from a neighbor. "Personally, I think the reason they don't tell you about it is not that they think you're not worth it—they just don't want to spend the money."
After years of learning how to work with—and around—government, healthcare and educational bureaucracies, Marlene has become a resource for other parents experiencing the same problems. As she says, "In a small town, that kind of thing gets around." In the film we see her counseling the mother of a young boy whose teachers are finding it impossible to deal with his Oppositional Defiant Disorder - Marlene is supportive of the mother, who is in despair over the school's inability to cope, yet at the same time sympathetic to the struggling, scared young teacher, who frankly admits that she has had no training to prepare her to deal with a violent child like this.
This intimate glimpse into the struggles and joys of Bethany's family is frank about the costs of the fight. Marlene feels guilty that their second daughter may have felt neglected, and she worries about what will happen to Bethany when she is no longer able to advocate for her. Despite these concerns, Mothers of Courage
remains an uplifting story of the best that can happen when parents, school, and community are able to work together to support children with special needs.
Drysdale, E. E., Jahoda, A., & Campbell, E. (2009). Investigating spontaneous attributions in mothers of individuals with intellectual disabilities and self-injurious behavior. British Journal of Learning Disabilities, 37
Mothers' attributions of self injurious behaviour (SIB) in their children with intellectual disability have been largely ignored. However, attributions may predict maternal well-being and engagement in treatment. Thirteen mothers of people who self-injured were recruited. A qualitative design was employed, the data being subjected to thematic analysis according to Braun & Clarke's (2006) guidelines. Weiner's (1980) attributional model informed development of semi-structured interviews, to explore the nature and content of their views about SIB. The mothers' attributions were consistent with dimensions of locus of cause, stability and controllability. They held different, sometimes contradictory views about causes of SIB. Although pessimistic regarding long-term improvement and often uncomfortable with interventions suggested by professionals, some felt able to exercise limited control over their offsprings' SIB. Control was also linked to stress, and a sense of responsibility when there was inadequate support. Sensitive, effective professional support for individuals engaging in SIB requires collaboration with carers, and understanding carers' views and feelings.
Duvdevany, I., & Abboud, S. (2003, May/June). Stress, social support and well-being of Arab mothers of children with intellectual disability who are served by welfare services in northern Israel. Journal of Intellectual Disability Research, 47
(4-5), 264-272. Background:
The present study examined the influence of a social support system on the level of stress and the sense of personal well-being of 100 Israeli Arab mothers of young children with special needs. Methods:
Fifty mothers were served by the welfare services in the Nazareth area while 50 did not get help on a regular basis. A comparison was done between educated, urban mothers, and less-educated, rural mothers. Results:
The research results point to a relationship between informal support resources, and the marital and economic stress of the mothers: the higher the amount of the informal support resources, the lower the level of stress that was experienced by the mothers. A relationship between the amount of informal support and level of parental stress was not confirmed. A relationship between the amount of support resources and the personal well-being of the mothers was found: the higher the amount of informal support resources, the higher the sense of well-being of the mothers. A relationship between formal support (the welfare services), and level of stress or personal well-being was not found. Education and place of living were not related to level of stress or personal well-being. Educated mothers from urban areas used the formal support (the welfare services) less than less-educated mothers who lived in rural areas. Conclusions:
The findings are interpreted with respect to practice and previous studies.
Eisenhower, A., & Blacher, J. (2006, December). Mothers of young adults with intellectual disability: Multiple roles, ethnicity and well being. In R. P. Hastings, A. Turnbull & B. Tonge (Ed.), Special Issue on Family Research. Journal of Intellectual Disability Research, 50
Two opposing perspectives—role strain and role enhancement—were considered as predictive of women's psychological and physical health. The authors examined the relation between multiple role occupancy (parenting, employment, marriage) and wellbeing (depression and health) among mothers of young adults with intellectual disability (ID). Participants were 226 mothers aged 35 0 years old caring for a young adult aged 16'6 years old with moderate to severe/profound ID. Mothers were of either Latino ethnicity (N = 117) or Anglo (N = 109). Mothers' ethnicity and degree of acculturation and young adults' adaptive behaviour and behaviour problems were examined as potential moderators. Mothers who were employed, married, or both reported better wellbeing than mothers who were both unemployed and unmarried, especially when their offspring had relatively higher adaptive functioning. This relationship between role occupancy and wellbeing was fully mediated by socioeconomic status (SES) factors. Results did not suggest a role enhancement effect, but instead indicated a role shortage effect; unemployed, unmarried mothers experienced markedly poor wellbeing, while all other mothers experienced comparable wellbeing. Wellbeing scores were higher for Anglo than for Latino mothers; this relationship was entirely accounted for by SES. In Latina mothers, the relation between role occupancy and wellbeing was moderated by degree of acculturation. Findings suggest that multiple roles benefit mothers of young adults with ID primarily through their impact on socioeconomic resources. For more acculturated Latina mothers, occupying more roles predicted better wellbeing even after controlling for SES. Latina mothers who were unemployed and unmarried had lower SES, and this group emerged as at particular risk. The latter group may benefit most from respite assistance and other interventions aimed at addressing their physical and mental health.
Engstrom, J. L., Sefton, M. G. S., Matheson, J., K., &. Healy, K. M. (Eds). (2005, May-June). Genomics in women’s health and midwifery [Feature issue]. Journal of Midwifery & Women’s Health, 50
This is a feature issue of the Journal of Midwifery & Women’s Health concerning “genomics” which is the study of the function and interactions of all the genes in the genome, rather than genetics, which is traditionally defined as the study of single genes, in women’s health and midwifery. There are many articles concerning prenatal screening. As noted in one article on newborn screening and genetic testing, “New screening techniques and diagnostic tests for genetic diseases available for newborn screening can provide information about many diseases long before they are clinically detected. However, this information creates complex questions and ethical dilemmas regarding which newborns should be tested, when testing should occur, availability and costs of tests, and how families should be counseled.” Included are a range of articles on genetics, with several concerning Down syndrome.
Erickson Warfield, M. (2001, August). Employment, parenting, and well-being among mothers of children with disabilities. Mental Retardation, 39
The influence of employment on parenting stress among mothers of 5-year-old children with developmental disabilities and the influence of parenting demands (i.e., caregiving difficulty and behavior problems) and family support on their work quality and absenteeism from work was examined. No significant associations were found between employment status and parenting demands, family support, or stress for the sample as a whole. Among employed mothers, those who rated their jobs as interesting reported significantly less parenting stress when they experienced low or mean levels of parenting demands. Mothers' interest in work did not moderate the negative influence of high levels of parenting demands on stress. Finally, parenting demands increased absenteeism but had no effect on work quality. Implications of these findings are discussed.
Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13
Parents of children with developmental disabilities, particularly autism spectrum disorders (ASDs), are at risk for high levels of distress. The factors contributing to this are unclear. This study investigated how child characteristics influence maternal parenting stress and psychological distress. Participants consisted of mothers and developmental-age matched preschool-aged children with ASD (N = 51) and developmental delay without autism (DD) ( N = 22). Evidence for higher levels of parenting stress and psychological distress was found in mothers in the ASD group compared to the DD group. Children's problem behavior was associated with increased parenting stress and psychological distress in mothers in the ASD and DD groups. This relationship was stronger in the DD group. Daily living skills were not related to parenting stress or psychological distress. Results suggest clinical services aiming to support parents should include a focus on reducing problem behaviors in children with developmental disabilities.
Ettorre, E. (2000). Reproductive genetics, gender and the body: 'Please doctor, may I have a normal baby?' Sociology, 34
This paper's purpose is to highlight key sociological issues that come to light when 'the body' becomes a theoretical site in reproductive genetics. By positioning the body as a central feature in this analysis, the paper: (1) describes how a mechanistic view of the body continues to be privileged in this discourse and the effects of this view; (2) examines how reproductive limits are practised on the gendered body through a feminised regime of reproductive asceticism and the discourse on shame; and (3) explores the social effects and limitations of reproductive genetics in relation to disability as a cultural representation of impaired bodies. The central assumptions concerning reproductive genetics are that it appears within surveillance medicine as part of a disciplinary process in society's creation of a genetic moral order, that it is mobilised by experts for the management of reproductive bodies and that it constructs a limited view of the body. Thus, the way reproductive genetics operates tends to hide the fact that what may appear as 'defective genes' is a result of a body's interaction not only with the environment but also gendered social practices valorised by difference as well as rigid definitions of health and illness. The research is from a 1995-96 European study of experts interviewed in four countries.
Farber, R. S. (2000, May/June). Mothers with disabilities: In their own voice. American Journal of Occupational Therapy, 54
(3), 260-268. Objectives:
The purpose of this study was to gain an understanding of the personal experience of women with disabilities engaged in the occupation of mothering and their perceptions of their interpersonal environment, including interaction with family, professional caregivers, and the community. Method:
In this qualitative study, in-depth interviews were conducted with a diverse sample (n=8) of mothers with disabilities or chronic illnesses to uncover the nature of their mothering experience. Data were analyzed for themes with the constant comparison approach of grounded theory. Results:
The quality of the participants' experience varied with the degree of perceived similarity or dissimilarity with other mothers and acceptance of these differences. In addition, their perception of the supportive or nonsupportive nature of their interpersonal environment had an impact on their mothering experience. Conclusion:
The results suggest that mothers with disabilities tend to value the importance of performing maternal occupations according to a perceived culturally common way, although self-acceptance of their own unique differences in performing these occupations facilitates maternal engagement as well.
Feder Kittay, E. (2009, July). The personal is philosophical is political: A philosopher and mother of a cognitively disabled person sends notes from the battlefield. In E. Feder Kittay and L. Carlson (Eds.), Cognitive Disability And Its Challenge To Moral Philosophy [Special Issue]. Metaphilosophy, 40
Having encountered landmines in offering a critique of philosophy based on my experience as the mother of a cognitively disabled daughter, I ask, "Should I continue?" I defend the idea that pursuing this project is of a piece with the invisible care labor that is done by people with disabilities and their families. The value of attempting to influence philosophical conceptions of cognitive disability by virtue of this experience is justified by an inextricable relationship between the personal, the political, and the philosophical. If one grants that the "special relationship" between mother and child requires moral recognition, then I need first to make vivid the case that this relationship in the case of a child who lacks some "normal capacities" is indistinguishable from any mother-child relationship. If this is so, then I believe I can make a case that has as its conclusion that the moral personhood of even the severely cognitively disabled must be granted. Moreover, such recognition, I argue, necessitates the recognition of others who bear no special relationships to the child.
Feldman, M. A., Ducharme, J. M., & Case, L. (1999). Using self-instructional pictorial manuals to teach child-care skills to mothers with intellectual disabilities. Behavior Modification, 23
Children of parents with intellectual disabilities (i.e., IQs less than 80, labeled as having mental retardation) are at risk for neglect due to inadequate parenting abilities. Previous studies have shown that these parents are responsive to parent-training packages consisting of instructions, pictorial cues, modeling, feedback, and reinforcement. This study evaluated the effectiveness of self-learning pictorial-parenting manuals in teaching basic child-care skills (diapering, treating diaper rash, bathing, safety) to parents with intellectual disabilities who are monitored by child protection agencies. The manuals alone increased child-care skills (to levels seen in parents without disabilities) in 9 out of the 10 mothers in the study and in 12 of 13 child-care skills. The remaining skill was acquired with the full training package. Follow-up indicated that the acquired skills were maintained for up to 3 years. Mean correct performance with the manual was positively correlated with the trainer's rating of the mother's reading level and acceptance of the manual when the mother was first given the manual. Consumer satisfaction ratings of the manuals were high. These results indicate that many parents with intellectual disabilities may improve their child-care skills without intensive training and that self-instruction may be an easily disseminable and cost-effective way of reducing the risk of child neglect due to parenting skill deficiencies.
Feldman, M. A., Legér, M., & Walton-Allen, N. (1997, December). Stress in mothers with intellectual disabilities. Journal of Child and Family Studies, 6
Both low parental IQ and stress have been shown to be associated with parenting difficulties and adverse child outcomes. We examined stress in parents with low IQ as a potential contributor to their documented parenting problems. Eighty-two mothers with intellectual disabilities (IQ < 80; labelled as having mental retardation) were given the Parenting Stress Index and they were found to be enduring very high levels of overall stress (95th percentile), stress related to child characteristics (95th percentile), and stress related to other life experiences (90th percentile) as compared to the normative test group. We divided the 82 mothers with intellectual disabilities into three groups depending on the age of their children. The mothers with school-age children reported significantly higher stress than parents of infant/toddler and preschool children. A hierarchical regression analysis revealed that child age and living in a crowded environment were significant predictors of parenting stress. The results confirm that mothers with intellectual disabilities experience extreme stress that, together with other factors, may hinder adequate parenting.
Finger, A. (1985). Claiming all of our bodies: Reproductive rights and disability. In S. E. Brown, D. Connors, & N. Stern (Eds.), With the power of each breath: A disabled women's anthology
(pp. 292 307). San Francisco: Cleis Press.
In this chapter Anne Finger raises a number of major criticisms of the reproductive rights movement. Her major criticism are: (1) the reproductive rights movement has by and large ignored the reproductive rights of women with disabilities; (2) it has not been physically accessible to women with disabilities; (3) it has ignored the forced sterilization of people with disabilities and failed to address the denial of reproductive rights to men and women with disabilities; and (4) many activists within the movement have used the issues raised by disabled fetuses in ways that are highly exploitative and prey upon fears of disability.
Finger addresses all of these criticisms in a very thoughtful manner as well as discussing issues raised by fetal diagnosis and the killings of newborns with disabilities. She also addresses issues of sexuality, birth control and parental rights of people with disabilities. Although Finger's major criticism is directed toward the reproductive rights movement she also criticizes the disability rights movement for ignoring the rights of women with disabilities.
Finger, A. (1990). Past due: A story of pregnancy, disability and birth.
Emeryville, CA: Seal Press.
"Th[is] story of the traumatic birth, and the grueling experience of parents waiting to see if a critically ill infant will live--and how--is riveting reading. Finger's anger at various people and agencies involved in her own and her child's medicalizations is authorized both by the details of her experience and by her unremitting honesty about her own complex, mixed, and not always pretty reactions to the extreme and unexpected difficulty of a longed-for experience of birth and parenting."
Francis-Connolly, E. (1998). It never ends: Mothering as a lifetime occupation. Scandinavian Journal of Occupational Therapy, 5
Little understanding exists of the occupation of mothering and how it changes and evolves throughout the life-course. Research to date has focused on how a child influences the marital dyad, with little exploration of the mothering experience. Occupational therapy literature has primarily focused on mothering within the context of illness and disability without first gaining a perspective of everyday mothering tasks and activities. Through in-depth interviews and focus groups, this study examines the mothering experiences of 17 American women ranging in age from 32 to 83 years. Emergent themes discussed in this paper include mothering as a lifetime occupation and the influence of the perfect mother image on the occupation of mothering.
Garbus, L., & Kennedy, R. (1999). Different moms
[Film]. Brooklyn, NY: Moxie Firecracker Films.
Every year, there are over 60,000 normally-developed children born to parents with mental disabilities. Different Moms
profiles three such families and the challenges they face. With the appropriate support and skills training, mothers and fathers with mental retardation can be wonderful parents; the stories told in this film show what is possible when such families are afforded the continuing support and guidance they require. However, most communities lack the very specific resources and training these families need; there are currently no more than 40 programs in the United States that are prepared to address the needs of these families. This film was a collaborative effort between The Arc of the United States and Lifetime Television.
Gardner, J., & Harmon, T. (2002). Exploring resilience from a parent's perspective: A qualitative study of six resilient mothers of children with an intellectual disability. Australian Social Work, 55
This article describes a study of the experiences of six resilient mothers of children with an intellectual disability from a phenomenological perspective, using a qualitative methodology. It includes a brief review of the literature on resilience, an explanation of how and why the six participants were chosen, and the type of questions they were asked.
In-depth interviews with the mothers were transcribed and analysed. The ten key themes that emerged from the data are described with an overriding statement defining the phenomenon of resilience as expressed by these six women. There is also some exploration of the implications of the findings for social work practice with families of people with an intellectual disability.
Garippo, G. (2003). Just for women: Pregnancy and SCI: Things to consider. PN/Paraplegia News, 57
Brief article discussing points to consider before planning a pregnancy for women with spinal cord injury. Offers advice on finding a physician, understanding the risks involved, and determining the level of assistance needed after the child is born.
Gerstein, E. D., Crnic, K. A., Blacher, J., & Baker, B. L. (2009, December).
Resilience and the course of daily parenting stress in families of young children with intellectual disabilities. In M. Broberg, J. Blacher, & E. Emerson (Eds.), Resilience and People with Intellectual Disabilities [Special Issue]. Journal of Intellectual Disability Research, 53
(12), 981-997. Background:
Parenting stresses have consistently been found to be higher in parents of children with intellectual disabilities (ID); yet, some families are able to be resilient and thrive in the face of these challenges. Despite the considerable research on stress in families of ID, there is still little known about the stability and compensatory factors associated with everyday parenting stresses. Methods:
Trajectories of daily parenting stress were studied for both mothers and fathers of children with ID across child ages 36–60 months, as were specific familial risk and resilience factors that affect these trajectories, including psychological well-being of each parent, marital adjustment and positive parent–child relationships. Results:
Mothers' daily parenting stress significantly increased over time, while fathers' daily parenting stress remained more constant. Decreases in mothers' daily parenting stress trajectory were associated with both mother and father's well-being and perceived marital adjustment, as well as a positive father–child relationship. However, decreases in fathers' daily parenting stress trajectory were only affected by mother's well-being and both parents' perceived marital adjustment. Conclusions:
Parenting stress processes are not shared entirely across the preschool period in parents of children with ID. Although individual parent characteristics and high-quality dyadic relationships contribute to emerging resilience in parents of children with ID, parents also affect each others' more resilient adaptations in ways that have not been previously considered.
Getch, Y. Q., Jones, S., Neuharth-Pritchett, S., & Chapmen, B. (2007, November). Hear my voice: An African American mother’s experience raising a child with a chronic illness. The Journal of Pan African Studies, 2
African American children are at greater risk of developing asthma and are more likely to die from asthma-related complications than European American children (Centers for Disease Control; Mannino et al. 1-13; U.S. Department of Health and Human Services) In addition, African Americans have poorer access to quality healthcare (U.S. Department of Health and Human Services). Scant research has been conducted regarding the experiences of African American mothers raising children with asthma and navigating the healthcare system. This qualitative study provides rich descriptions of a well-educated African American woman’s experience raising a child with asthma, allergies, and eczema. The case illustrates the stressors that may be experienced by many women who have children with chronic illnesses, and voices perhaps unique issues experienced by African-American mothers. Themes that emerged from the data included role strain, marital strain, insurance issues, barriers to quality medical care, impact on career, time management, childcare issues, family support, and the importance of spirituality. The authors describe each theme and provide specific examples to support conclusions derived from the data.
Glaun, D. E., & Brown, P. F. (1999, March). Motherhood, intellectual disability and child protection: Characteristics of a court sample. Intellectual & Developmental Disability, 24
Attitudes still prevail in society that children of mothers who have an intellectual disability may be at increased risk of neglect or abuse. The present study retrospectively examined Children's Court Clinic case notes and records of 12 families before the Court on child protection grounds, in which the mother had a documented intellectual disability. Predominantly neglect rather than abuse was alleged. Mothers frequently had a history of deprivation, neglect or sexual abuse in their own childhoods. A high prevalence of co-morbidity, such as drug abuse, psychiatric or medical disorder, was a significant finding in these mothers. Fathers were often absent, but when involved, many were ill equipped to help because of intellectual or health problems. Possible risk factors within the child were high levels of developmental delay and multiple handicap. Findings suggest that the cumulative weight of stressful emotional, physical and social factors, in combination with limited intellectual resources, precipitated a crisis in child care.
Gordon, M., Cuskelly, M., & Rosenman, L. (2008, September). Influences on mothers' employment when children have disabilities. Journal of Policy and Practice in Intellectual Disabilities, 5
Empirical research has highlighted the constraints on mothers' workforce participation when children have disabilities, but the policies and associated strategies needed to address these issues have received less attention. Greater attention to explanatory theory and associated research is needed. The authors' paper identifies major explanatory concepts in studies of women's workforce participation, and examines the extent to which these have been tested in studying the workforce participation of mothers of children with disabilities. They also identify constructs and empirical research findings from the latter body of research that have implications for theories of all women's workforce participation. The analysis demonstrates that there are many potentially relevant constructs from theories of women's workforce participation that have not been applied to studies of mothers of children with disabilities. Similarly, some findings about the influence of disability-related factors on mothers' workforce participation have implications for operational constructs associated with theories of women's workforce participation. The authors' examination of theoretical frameworks and empirical research underscored the importance of exchange and cross-fertilization of ideas between disability-oriented research and that concerned with women's labor force participation.
Graham, J. (1999). Multiple sclerosis and having a baby: Everything you need to know about conception, pregnancy, and parenthood.
Rochester, VT: Inner Traditions International, Ltd.
Diagnosed with MS at twenty-eight, author Judy Graham gave birth for the first time at the age of thirty-eight. Her new book Multiple Sclerosis and Having a Baby
provides other women who are considering starting a family with the kind of genuine and useful insight that comes only from firsthand experience. Multiple Sclerosis and Having a Baby
makes available not only the medical answers prospective parents need, but also the practical suggestions and sound advice that will help them meet the many unique and sometimes difficult challenges that face couples living with MS.
In this highly informative and readable book, Graham asks and provides answers for nearly every question a woman with multiple sclerosis might want to consider before having a baby. With the latest medical facts and valuable data culled from hundreds of interviews with women who have multiple sclerosis and are currently raising a child, Graham straightforwardly addresses such issues as the possibility of relapse, genetic predisposition to MS, sexuality and fertility, pregnancy, postnatal care, and breastfeeding as they relate to women with MS.
Gray, D. E. (2003, February). Gender and coping: The parents of children with high functioning autism. Social Science and Medicine, 56
Gender is a concept that is frequently discussed in the literature on stress, coping and illness. Research has reported that women are more vulnerable than men are to stressful events and use different strategies to cope with them. Furthermore, it is often asserted that these gender-based differences in coping may partially explain the differential impact of stressful events on men and women. Unfortunately, much of this research has equated gender with sex and failed to contextualise the experience of illness and coping. This paper presents a qualitative analysis of the role of gender and coping among parents of children with high functioning autism or Asperger's syndrome in an Australian sample. It attempts to analyse the different meanings of the disability for mothers and fathers and describes the various strategies that parents use to cope with their child's disability.
Green, S. E. (2003, January-March). They are beautiful and they are ours: Swapping tales of mothering children with disabilities through interactive interviews. Journal of Loss & Trauma, 8
This article presents a layered account of an interactive interview in which the author and interviewee exchange stories of the joys and traumas surrounding the births, diagnoses, and early lives of their children with disabilities (cerebral palsy and autism). Woven into the narrative layers are also the author's reflections on this interview and those conducted with six other mothers of children with disabilities and/or chronic impairments. The power and therapeutic value, to researchers as well as interviewees, of narrative exchange through the vehicle of interactive interviews are highlighted in the author's emotional response to the interview process.
Green, S. E. (2007, January). “We’re tired, not sad”: Benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64
Caregiver burden has received considerable emphasis in the literature on the social experience of mothering children with disabilities. Little attention has been paid, however, to either the nature of the burdens perceived or to maternal ability to see beyond the burdens to the benefits of their caregiving role. This study utilizes a mixed methods approach to examine these neglected aspects of the social experience of mothering children with disabilities. Findings of a survey of 81 mothers of children with disabilities in Florida, USA and follow-up interviews with 7 of these mothers indicate that:
- For most of the mothers included in the study, “the burden of care” is a matter of socio-structural constraints (Objective Burden) rather than emotional distress (Subjective Burden);
- Despite the socio-structural constraints associated with caring for a child with complex needs, most mothers perceive valuable benefits in having a child with a disability; and
- Perceived Stigma has an important positive impact on both dimensions of burden and, through its impact on Subjective Burden, can decrease the perceived benefits of caring for a child with a disability.
Gegg, R. (1993, September). "Choice" as a double-edged sword: Information, guilt and mother-blaming in a high-tech age. Women & Health, 20
Women in the United States experience pregnancy in the context of more medical interventions than ever before. Procreative technologies can enhance both the range of choices for women and the possibility of greater social control of women's choices. Sometimes procreative technologies are a matter of routine, not choice. New developments in genomic research and prenatal diagnosis may lead to the routinization of further medical interventions in pregnancy. Women increasingly may lose the freedom to choose not to use prenatal tests or the information they provide. This article is drawn from a study of women's experiences of pregnancy. The women's stories and two examples of recent news reports demonstrate some of the pressures women face as they attempt to make choices about pregnancy and motherhood. The examples indicate that women face subtle and overt pressures on their "choices."
Grue, L., & Lærum, K. T. (2002, October). 'Doing motherhood': Some experiences of mothers with physical disabilities. Disability & Society, 17
In this paper, we discuss the experiences of physically disabled mothers. We interviewed 30 women in the age group 28-49 with medical diagnoses such as: multiple sclerosis, neuromuscular diseases, cerebral palsy and spinal cord injury Becoming a mother implied for many 'capturing' a gender or 'recapturing' a lost gender. They women felt they had to go to great lengths to 'present' themselves and their children as managing 'normally' in order to be accepted as 'ordinary' mothers. Eventually, they feared that their children might be taken away from them if they did not live up to other people's expectations. One possible explanation for what they experienced as other people's scepticism might be that disabled people on the whole are primarily still looked upon as being dependent on other people's help and care. In short, they are often looked upon by professionals and lay people as receivers, and not as carers.
Gulick, E. E., & Johnson, S. (2004). Infant health of mothers with multiple sclerosis. Western Journal of Nursing Research, 26
Controversy surrounds whether mothers with multiple sclerosis (MS) who wish to breast-feed their infants should forgo breast-feeding in order to resume immunomodulating therapy following birth even though breast-feeding has not been shown to have deleterious effects on these mothers. Knowledge of potential health benefits to infants through breast-feeding could influence health care providers to encourage mothers with MS who wish to breast-feed to do so. This study of 140 breast-feeding and 35 non-breast-feeding mothers with MS identifies the type and prevalence of illnesses experienced by their infants during the first 6 postpartum months and at 9 months and 12 months. Significantly more non-breast-fed than breast-fed infants experienced otitis media, lower respiratory illness, constipation, milk intolerance, and allergy during the 1st year. Study results support the need to encourage mothers with MS who wish to breast-feed their infants to do so and to delay immunomodulating therapy until breast-feeding cessation.
Harp, C. R. (2005, Spring). Autism moms. Lilith, 30
In a city in the Midwest, a growing cadre of Jewish moms bond. They have special-needs kids and a special Jewish community. Illustrations by Israeli artists--children and adults--with autism.
Harris, J. (2005, March). Reproductive liberty, disease and disability. Reproductive BioMedicine Online, 10
(Supp. 1), 13-16.
There are many arguments from many sides, which purport to give reasons for limiting access to reproductive technologies and to gene-based reproductive procedures. There is one reason to reject them all, and that is that they do not point to dangers or harms of sufficient seriousness, probability or proximity to justify the limitation on human freedom that they require. This paper shows why this is so and argues that reproductive liberty must also include the liberty to select against disability both for moral and for libertarian reasons. This is from a supplement on "Ethics, Law and Moral Philosophy of Reproductive Biomedicine."
Harrison, T., & Stulfbergen, A. (2002, July). Disability, social support, and concern for children: Depression in mothers with multiple sclerosis. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 31
(4), 444-453. Objective:
To investigate the relationship between disability, concern for children, social support, and depressive symptoms in a group of mothers with multiple sclerosis (MS). Design:
An exploratory secondary analysis using correlation and multiple regression techniques. Setting and Participants:
Two hundred one women with MS responded to a survey as part of a cohort participating in a longitudinal study of health promotion and quality of life. Outcome Measures:
Depressive symptoms were measured using the CESD-10. Results:
The results indicate that disability and concern for children are independent predictors of depressive symptoms, and social support can partially mediate the effect of concern for children on depressive symptoms. Conclusion:
Appropriate support should be identified and provided by nurses caring for mothers with disabilities such as MS to decrease the depressive symptoms related to the concern they have for their children.
Haseltine, F. P., Cole, S. S., & Gray, D. B. (Eds.). (1993). Reproductive issues for persons with physical disabilities.
Baltimore: Paul H. Brookes Publishing Co.
This book challenges the social stereotypes about reproduction and disabilities and presents the fact that people with disabilities do have sexual needs and desires. The chapters in this book explore the reproductive issues associated with congenital and acquired disabilities, and include such topics as fertility, health care needs, contraception, adoption, genetic counseling, pregnancy, parenting, sexually transmitted diseases, sexual dysfunction, and reproductive physiology. Contributing authors include researchers, people with disabilities, academics, medical professionals, and psychologists.
The book is an interesting blend of academic articles and personal stories. For example, a rather clinical article about how a woman with a disability may experience pregnancy, labor, and delivery, is preceded by a personal account of a woman with a physical disability sharing her experiences of pregnancy and childbirth. By weaving these two styles together in this way, the book becomes more than a clinical guide to reproduction and sexuality, rather it becomes a book for people with disabilities to share their experiences in these areas, which is a much needed addition to the literature on sexuality and disability.
Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Delgi Espinosa, F., & Remington, B. (2005, October). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9
Despite the theoretical and demonstrated empirical significance of parental coping strategies for the wellbeing of families of children with disabilities, relatively little research has focused explicitly on coping in mothers and fathers of children with autism. In the present study, 89 parents of preschool children and 46 parents of school-age children completed a measure of the strategies they used to cope with the stresses of raising their child with autism. Factor analysis revealed four reliable coping dimensions: active avoidance coping, problem-focused coping, positive coping, and religious/denial coping. Further data analysis suggested gender differences on the first two of these dimensions but no reliable evidence that parental coping varied with the age of the child with autism. Associations were also found between coping strategies and parental stress and mental health. Practical implications are considered including reducing reliance on avoidance coping and increasing the use of positive coping strategies.
Having a daughter with a disability: Is it different for girls? (1990, October). NICHCY News Digest No. 14.
Washington, DC: National Information Center for Children and Youth with Disabilities. Retrieved March 1, 2005 from http://www.nichcy.org/pubs/outprint/nd14.pdf
“This…NEWS DIGEST focuses on some of the realities parents must face in helping their daughters with disabilities to become more self-reliant and, ultimately, independent. You may ask, ‘Why a special issue on gender? Are the issues really that different for boys and girls?’ The answer is: Yes. While the issues of independence and self-determination obviously apply to sons with disabilities as well as to daughters, the degree to which daughters with a disability are encouraged to strive for an independent life may be critically less. The psychological and feminist literature inform us that these are issues of society in general, with important differences existing in how males and females are socialized, counseled, and educated. These differences have far-reaching implications for how males and females view themselves and what they achieve.”
Helm, D. T., Miranda, S., & Chedd, N. A. (1998, February). Prenatal diagnosis of Down syndrome: Mothers' reflections on supports needed from diagnosis to birth. Mental Retardation, 36
A qualitative study involving 10 mothers who received a prenatal diagnosis of Down syndrome and chose to continue their pregnancy was presented. The time frame considered was diagnosis to delivery. We looked at how the diagnosis was presented, the decision to continue the pregnancy, and the mothers' experience with professionals from diagnosis to delivery. Mothers' suggestions to others facing the same challenges and to their health care providers were discussed as were the types of support given these mothers and what was or would have been most helpful to them. The importance of professionals reviewing their procedures and protocols for working with families facing similar circumstances was stressed.
Hensley Owens, K. (2009). Confronting rhetorical disability: A critical analysis of women's birth plans. Written Communication, 26
Through its analysis of birth plans, documents some women create to guide their birth attendants' actions during hospital births, this article reveals the rhetorical complexity of childbirth and analyzes women's attempts to harness birth plans as tools of resistance and self-education. Asserting that technologies can both silence and give voice, the article examines women's use of technologies of writing to confront technologies of birth. The article draws on data from online childbirth narratives, a childbirth writing survey, and five women's birth plans to argue that women's silencing, or rhetorical disability, during childbirth both prompts and limits the birth plan as an effective communicative tool. The data suggest that the birth plan is not consistently effective in the ways its authors intend. Nonetheless, this analysis also demonstrates that the rhetorical failure of the birth plan can be read as, and thereby transformed into, rhetorical possibility.
Hill, C., & Rose, J. (2009, December). Parenting stress in mothers of adults with an intellectual disability: Parental cognitions in relation to child characteristics and family support. In M. Broberg, J. Blacher, & E. Emerson (Eds.), Resilience and People with Intellectual Disabilities [Special Issue]. Journal of Intellectual Disability Research, 53
(12), 969-980. Background:
There is a body of evidence that indicates that the cognitions of parents of children with intellectual disabilities (ID) play an important role in influencing parental stress. However, there is a paucity of evidence about the experience of parents of adult children with ID. This study sought to apply a model of parenting stress to mothers of adults with ID. Of particular interest were the parental cognitions of parenting self-esteem and parental locus of control. Method:
Face-to face interviews were administered with 44 mothers of adults with ID. They completed the Vineland Adaptive and Maladaptive Behaviour Scale, the Family Support Scale, the Parenting Sense of Competence Scale, a shortened version of the Parental Locus of Control Scale and the Parenting Stress Index. Results:
Correlations were observed between parenting stress and the other study variables. Regression analysis revealed that parental cognitive variables predicted 61% of the variance in parenting stress. Parenting satisfaction, a subscale of the measure of parenting sense of competence, mediated the relationships between adaptive behaviour and parenting stress and between family support and parenting stress. Conclusions:
These results indicate the importance of cognitive variables in the stress of mothers of adults with ID. Potential avenues of future research might focus on the experience of fathers and the impact of positive perceptions as a cognitive factor.
Hill, C., & Rose, J. (2009, December). Parenting stress in mothers of adults with an intellectual disability: parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 53
(12), 969-980. Background:
There is a body of evidence that indicates that the cognitions of parents of children with intellectual disabilities (ID) play an important role in influencing parental stress. However, there is a paucity of evidence about the experience of parents of adult children with ID. This study sought to apply a model of parenting stress to mothers of adults with ID. Of particular interest were the parental cognitions of parenting self-esteem and parental locus of control. Method:
Face-to face interviews were administered with 44 mothers of adults with ID. They completed the Vineland Adaptive and Maladaptive Behaviour Scale, the Family Support Scale, the Parenting Sense of Competence Scale, a shortened version of the Parental Locus of Control Scale and the Parenting Stress Index.
Correlations were observed between parenting stress and the other study variables. Regression analysis revealed that parental cognitive variables predicted 61% of the variance in parenting stress. Parenting satisfaction, a subscale of the measure of parenting sense of competence, mediated the relationships between adaptive behaviour and parenting stress and between family support and parenting stress.
These results indicate the importance of cognitive variables in the stress of mothers of adults with ID. Potential avenues of future research might focus on the experience of fathers and the impact of positive perceptions as a cognitive factor.
Hill, M. (n.d.). Mothers with disabilities [Online]. BabyZone.com.
Retrieved March 16, 2005 from http://www.babyzone.com/features/content/display.asp?contentid=1537
Many mothers with disabilities are able to adapt and overcome the challenges of their disability to be successful, loving parents. Mary Hill writes this article from her perspective as a mother with a disability. “Our message: We are parents first and foremost, and despite our disability, we have the same concerns as all mothers as we raise and nurture our children.”
Hoffman, C. D., Sweeney, D. P., Hodge, D., Lopez-Wagner, M. C., & Looney, L. (2009). Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24
Mothers of children diagnosed with autism (N = 104) reported higher levels of stress than mothers of typically developing children (N = 342) on 13 of 14 subscales of the Parenting Stress Index. The only scores that did not differ were from the Attachment subscale, which indicates lack of emotional closeness and rather cold patterns of parent-child interaction. Mean Child Domain subscale scores for mothers in the autism group were at the 99th percentile; mean scores on the Attachment subscale were at about the 50th percentile for both groups. Despite substantial stress, mothers of children with autism report close relationships with their children. Results substantiate the need to develop interventions to help these mothers reduce their stress.
Home, A. (2002). Challenging Hidden Oppression: Mothers Caring for Children with Disabilities. Critical Social Work, 3
(1). Available: http://uwindsor.ca/
There is growing recognition that people with disabilities face oppression in a society which marginalizes those who are different; however, there is evidence that families living with disability also face exclusion, inadequate services and stigmatizing attitudes. Existing research uses gender-neutral terms, which obscure women’s primary role in care giving and hide the high costs they bear. This paper examines the hidden, gender-based oppression experienced by mothers caring for children with disabilities. Relevant literature is reviewed critically to analyse difficulties these women encounter and supports they use. Examples are drawn from three exploratory studies of role quality and supports, reported by mothers caring for children with disabilities.
Home, A., & Biggs, T. (2005). Evidence-based practice in the real world: A group for mothers of children with invisible disabilities. Groupwork, 15
Evidence-based groupwork is becoming essential but is difficult to implement in the real world of competing priorities, time and resource constraints. This paper discusses a collaborative pilot-project, in which a scholar-practitioner team adapted evidence-based principles to develop and evaluate an innovative group. As research and practice evidence indicate mothers of children with invisible disabilities have unique, unmet needs, a short-term support-education group was set up. Using a single-case design, intervention was documented, mutual helping was observed and outcome (goal attainment, empowerment, satisfaction) was evaluated. Findings suggest this group was relevant and responsive to these mothers' needs, despite member diversity and a short time frame. Sharing experiences, strategies and resources was seen as especially beneficial. Factors contributing to the outcome may include appropriate groupwork models, members' strengths and motivation, as well as the collaborative team approach. While this pilot-project allowed innovation while ensuring outcome was monitored, replication is needed to verify outcome, identify influential factors and continue to develop evidence-based practices which reflect the realities of groupwork.
Horwitz, S. M., Kelleher, K. J., Stein, R. E. K., Storfer-Isser, A., Youngstrom, E. A., Park, E. R., Heneghan, A. M., Jensen, P. S., O'Connor, K. G., & Hoagwood, K. E. (2007, January). Barriers to the identification and management of psychosocial issues in children and maternal depression. Pediatrics, 119
(1), e208-e218. Context.
Child psychosocial issues and maternal depression are underidentified and undertreated, but we know surprisingly little about the barriers to identification and treatment of these problems by primary care pediatricians. Objectives.
The purpose of this work was to determine whether (1) perceived barriers to care for children's psychosocial issues and maternal depression aggregate into patient, physician, and organizational domains, (2) barrier domains are distinct for mothers and children, and (3) physician, patient, and practice/organizational characteristics are associated with different barrier domains for children and mothers. Methods.
We conducted a cross-sectional survey of the 50818 US nonretired members of the American Academy of Pediatrics. Of a random sample of 1600 members, 832 (745 nontrainee members) responded. This was a mailed 8-page survey with no patients and no intervention. We measured physician assessment of barriers to providing psychosocial care for children's psychosocial problems and maternal depression. Results.
Pediatricians frequently endorse the lack of time to treat mental health problems (77.0%) and long waiting periods to see mental health providers (74.0%) as the most important barriers to the identification and treatment of children's psychosocial problems. For maternal depression, pediatricians most often endorsed lack of training in treatment (74.5%) and lack of time to treat (64.3%) as important barriers. Pediatricians' reports of barriers clustered into physician and organizational domains. Physician domains were distinct for children and mothers, but organizational domains were not. Several physician and practice characteristics are significantly associated with the 4 barrier scales, and different characteristics (eg, sociodemographic, attitudinal, and practice features) were related to each barrier area. Conclusions.
Pediatricians endorse a wide range of barriers with respect to the diagnosis and treatment of children's mental health problems and maternal depression. The specificity of factors relating to various barrier areas suggests that overcoming barriers to the identification and treatment of child mental health problems and maternal depression in primary care pediatrics is likely to require a multifaceted approach that spans organizational, physician, and patient issues. In addition, comprehensive interventions will likely require social marketing approaches designed to engage diverse audiences of clinicians and their patients to participate.
Huang, Z. J., Wong, F. Y., Ronzio, C. R, & Yu, S. M. (2007, May). Depressive symptomatology and mental health help-seeking patterns of U.S.- and foreign-born mothers. Maternal and Child Health Journal, 11
(3), 257-267. Objectives:
This report presents the national estimates of maternal depressive symptomatology prevalence and its socio-demographic correlates among major racial/ethnic-nativity groups in the United States. We also examined the relationship of mental health-seeking patterns by race/ethnicity and nativity. Methods:
Using the Early Childhood Longitudinal Survey-Birth Cohort Nine-month data, we present the distribution of Center for Epidemiological Study-Depression (CES-D) score by new mothers’ nativity and race/ethnicity. The mental health-seeking pattern study was limited to mothers with moderate to severe symptoms. Weighted prevalence and 95% confidence intervals for depression score categories were presented by race/ethnic groups and nativity. Multi-variable logistic regression was used to obtain the adjusted odds ratios of help-seeking patterns by race/ethnicity and nativity in mothers with moderate to severe symptoms. Results:
Compared to foreign-born mothers, mothers born in the U.S. were more likely to have moderate to severe depressive symptoms in every racial/ethnic group except for Asian/Pacific Islanders. These US-born mothers were also more likely to be teenagers, lack a partner at home, and live in rural areas. Among Asians, Filipina mothers had the highest rate of severe depressive symptoms (9.6%), similar to those of US-born black mothers (10.2%). Racial/ethnic minorities and foreign-born mothers were less likely to consult doctors (OR: 2.2 to 2.5) or think they needed consultation (OR: 1.9 to 2.2) for their emotional problems compare to non-Hispanic White mothers. Conclusion:
Our research suggests that previous “global estimates” on Asian American mental health underestimated sub-ethnic group differences. More efforts are needed to overcome the barriers in mental health services access and utilizations, especially in minority and foreign-born populations.
Hume, J. (1996, January 26). Disability, feminism and eugenics: Who has the right to decide who should or should not inhabit the world?
Paper presented at the Women's Electoral Lobby National Conference, University of Technology, Sydney, Australia. Retrieved March 17, 2005 from http://www.wwda.org.au/eugen.htm
“In this paper I wish to explore the implications of the resurgence of the ‘new eugenics’ as a philosophy underpinning modern reproductive practices from the perspective of the abuse and denigration of the rights in people with disabilities in general and women with disabilities in particular. These practices, I believe also infringe women's rights and should be a matter of grave concern for all feminists. The following discussion is not about the rights and wrongs of the abortion debate but adopts a disability rights interpretation of new reproductive and genetic technologies.”
Ingram, D., & Hutchinson, S. (2000). Double binds and the reproductive and mothering experiences of HIV-positive women. Qualitative Health Research, 10
In spite of the increasing number of young women infected with HIV in the United States, little is known about the reproductive and mothering experiences of these women. The purpose of the grounded-theory research discussed in this article was to describe the reproductive and mothering experiences of HIV-positive women. Twenty HIV-positive women participated in 31 in-depth interviews. The grounded-theory method was used for data analysis. A communication pattern known in the psychiatric literature as a double bind was discovered to be a basic social psychological problem that affected the women's experiences with reproduction and mothering. An understanding of the power and influence of these double binds permits health care professionals to plan patient-centered programs and to individualize care specifically for HIV-positive women.
Jackson, E. (2000). Abortion, autonomy and prenatal diagnosis. Social & Legal Studies, 9
The principle of patient self-determination has assumed central importance in British medical law in recent years. This article considers whether this increasingly strong commitment to patient autonomy has any resonance for abortion law. In particular, this article explores the possibility that the priority currently accorded to autonomous decision making may be in tension with the Abortion Act's requirement that a woman's reasons for seeking to terminate her pregnancy be judged acceptable by two medical practitioners. Moreover, interest in the moral legitimacy of a woman's reasons for wanting to terminate her pregnancy seems to be intensifying. Concerns arising from the increasing availability of precise prenatal tests have led to suggestions that access to abortion should be further restricted in order to prevent the cavalier use of abortion for reasons that might seem trivial or misguided. Using abortion following prenatal diagnosis as an example, this article considers whether it is anomalous for the common law's vigorous protection of an individual's freedom to make irrational or morally objectionable choices about his or her medical treatment to coexist with demands for further restriction of the acceptable grounds for abortion.
Kallianes, V., & Rubenfeld, P. (1997, April). Disabled women and reproductive rights. Disability & Society, 12
Both the women's and disability rights movements have paid scant attention to the concerns of disabled women, especially involving sexuality, reproductive freedom and mothering. Although their concerns may seem opposite of the women's movement's primary agenda, they are based on the same position: women must not be defined solely by biological characteristics and have the right to make decisions about their bodies and lives. Disabled feminists often support 'reproductive rights', but also have different perspectives on abortion and reproductive technologies than non-disabled feminists. The literature indicates that the reproductive rights of disabled women are constrained by: the assumption that disabled women are asexual; lack of reproductive health care, contraception, and sexuality information; and, social resistance to reproduction and mothering among disabled women. Disabled women are at risk for a range of undesirable outcomes, including coercive sterilization, abortion or loss of child custody.
Kaplan, D. (1994). Prenatal screening and diagnosis: The impact on persons with disabilities. In K. H. Rothenberg & E. J. Thomson (Eds.), Women and prenatal testing: Facing the challenges of genetic technology
(pp. 49-61) [Women & Health]. Columbus: Ohio State University Press. Retrieved July 15, 2006 from http://www.ohiostatepress.org/Books/Complete%20PDFs/Rothenberg%20Women/06.pdf
“The purpose of this chapter is to examine some of the policy implications of prenatal screening from a disability perspective. That perspective is based on the life experiences of persons with disabilities who have attained academic, scientific, and social roles that provide them with an opportunity to present a new way of looking at the value of living with a disability. This chapter also reviews some of the most commonly given reasons for prenatal screening and extracts potential research topics from an analysis of those reasons” (pp. 49-50).
The book Women and Prenatal Testing is no longer available in a traditional print edition. Nevertheless, the PDF files have been made available for any non-commercial purpose.
Kaplan, D., & Saxton, M. (n.d.). Disability community and identity: Perceptions of prenatal screening.
Oakland, CA: World Institute on Disability. Retrieved March 15, 2005 from http://www.ourbodiesourselves.org/book/companion.asp?id=31&compID=43&page=2
This article explores the social origins of disability discrimination and its implications for prenatal diagnosis, and examines some of the objections to screening expressed by people with disabilities. This article is included as a link on the companion web site for the book, Our Bodies, Ourselves
Karsh, J. (Director). (2003). My flesh and blood
[Film]. San Francisco: Chaiken Films.
This 2003 Sundance Documentary Feature Audience Award winner follows a year in the life of a family of thirteen children with various disabilities headed by a single mom. Honest and touching, the film explores the definition of family while shattering many commonly held assumptions of disability as tragedy and deficiency. What is a “traditional” family? Who is family? Central to this film is the idea that all of these kids are kids first.
Kaufman, M. (Ed.). (1997). Mothering teens: Understanding the adolescent years.
Toronto: The Women’s Press.
“Twenty-two professionals bring their expertise to a wide range of topics–adolescent development, spirituality, violence, activism, sexuality and sexual orientation, body image, mothering a teen mother, to mention only some. They examine with insight and understanding, the factors that confront adolescents in their daily lives: issues of racism, class, disability, addiction, divorce and death as well as academic performance and teen culture. Mothering Teens
is a long-awaited, indispensable collection for all who accompany teenagers on their way to adulthood.”
Kent, D. (2002). Beyond expectations: Being blind and becoming a mother. Sexuality and Disability, 20
In this article, the author, who is blind, reflects on her experiences with pregnancy, birthing, and raising a child. She discusses society's negative attitudes about blind women and motherhood, and the way these attitudes become obstacles in a blind woman's life. The importance of networking between blind parents is emphasized.
Kermanshahi, S. M., Vanaki, Z., Ahmadi, F., Kazemnejad, A. & Azadfalah, P. (2008). Children with learning disabilities: A phenomenological study of the lived experiences of Iranian mothers. International Journal of Qualitative Studies on Health and Well-Being, 3
Nursing as a family-oriented profession involves supporting mothers of children with learning disabilities to gain an awareness of their role. However, few studies have explored the whole experience of such mothers. This study embarks on an understanding of lived experiences of Iranian mothers who have children with learning disabilities. A qualitative approach was adopted using the phenomenology of semi-structured interviews carried out with six Iranian mothers whose children attended a special school in Tehran. The data were analysed in line with van Manen's suggestions. Two main themes were abstracted; being the centre of stress circles
and being in the midst of life and death
. Themes include care management challenges for self and child, experiencing through helplessness and hopefulness and experiencing self devote and self neglect. Overall, a majority of mothers experienced a stressful life. The study concludes that Iranian mothers' lived experience of having children with learning disabilities can be likened to the constant swing of a pendulum between two polarities of positive and negative feelings. This knowledge can provide an heuristic to help health staff guide mothers in adjusting to their children who have learning disabilities.
Kidd, K. (2004, Winter). The mother and the angel: Disability Studies, mothering and the 'unreal' in children's fiction. Disability Studies Quarterly, 24
As Lennard Davis points out, disability is a porous and unstable category that can be defined and conceptualized in a number of ways. This paper explores disability in the context of mothering, - particularly in terms of stress-related trauma indicators or other mental health issues - and its representation in British fiction in a number of literary-fantastical and supernatural forms. Following Davis' argument that realism in the novel is associated historically with ideas of the primacy of the "average," or "normal," Davis (2001 p. 543), I make a distinction between disability in "realist" and "magic fantastical" children's fiction, taking David Almond's novel Skellig
(1998) as a central example. I explore the ways in which the central figure of the angel emblematises the distinction between the imaginative and the adult, "everyday" world: and the way in which this takes a transgressive or socially liberating form. I compare this to the more historical-realist approach found in Michelle Magorian's Goodnight Mr. Tom
(1983). Parallels are drawn with the themes of mothering, disability and discourse found within Philip Pullman's children's trilogy His Dark Materials
(2001). A final comparison is drawn with Jan Needle's My Mate Shofiq
(1978). I have picked these texts because they display different approaches to mental health, mothering, disability and the adventuring child and — although the central themes are common — they span different genres and generations. The difference between the four works is summarized in the way they suggest the children of mothers with traumatic stress disorders or other mental illnesses should be treated: whether, (as historically was the case) when parents experience mental disorder, the children should be removed semi-automatically, as if from "danger" and abuse, or (in line with more recent mental health and family welfare policies) supported to achieve constructive parenting and maintain children's well being.
Killoran, C. (1994). Women with disabilities having children: It's our right too. Sexuality and Disability, 12
This article is a first person account of the experiences of a woman with multiple sclerosis who chose to have a child. Killoran discusses the difficulties she encountered when dealing with the medical establishment, with fertility services, and with society's responses to her pregnancy and motherhood. She also discusses her experiences during pregnancy and motherhood. Also included in this article is a comparison of her experiences with the experiences of women who do not have disabilities.
Kingston, A. K. (2003, April 20-24). Maternal power against a deaf Irish state: Unearthing the narratives of mothers of children with learning disabilities.
Paper presented at Gender and Power in the New Europe, the 5th European Feminist Research Conference, Lund University, Sweden. Retrieved March 31, 2005 from http://www.5thfeminist.lu.se/filer/paper_319.pdf
“This paper discusses findings from a qualitative study of mothers with children with Autistic Spectrum Disorders, Down syndrome and/or Attention Deficit Hyperactivity Disorder (ADHD) in Ireland. Firstly, I will give a brief historical introduction to existing disability policies in Ireland and give examples of the power struggle between mothers and the Irish State. Secondly, I discuss my preliminary research findings of my participants’ lived experience of mothering a child with special needs. Finally, I will argue that the feminist movement has ignored this group of women in our society who, as active agents for their children, are fighting a very lonely battle and need a structured feminist forum for emancipation.”
Klebine, P., & Lindsey, L. (2003, March). Pregnancy for women with SCI info sheet #14.
Birmingham, AL Office of Research Services UAB Spain Rehabilitation Center. Retrieved April 1, 2005 from http://www.spinalcord.uab.edu/show.asp?durki=56785&site=1021&return=21479
Discusses the issues of planning for pregnancy, care during pregnancy, labor & delivery. Lists additional resources.
Klein, S. M., & McCble, H. (2007). From mother to disability professional: Role change, resilience, and rewards. Journal of Early Intervention, 29
This qualitative research study examined professional mothers’ views about their employment in the field of early intervention, their roles with other families, and the place such employment has in their lives. Fourteen mothers working in the field of early intervention after having children with disabilities were interviewed. We examined their experiences with, reactions to, and views of their employment situation and its relationship to adaptation and coping. Factors that influenced these views also were examined. Four themes were identified: (a) benefits of listening and sharing, (b) impact of personal experiences on career and credibility with clients, (c) impact of career on personal and professional growth, and (d) recognition of mothers’ expertise by professionals. Implications for families and state and local early intervention service delivery systems are discussed.
Kocher, M. (1994). Mothers with disabilities. Sexuality and Disability, 12
This article is a collection of experiences regarding motherhood expressed by six women who have physical disabilities. Topics covered include the difficulties imposed by the disability and the challenges of motherhood. These women's experiences challenge the notion that good mothers must be physically active with her children and instead focuses on the personal relationships between mother and child as the important part of parenting. The author also highlights the necessity and value of a support system (peer supports) in order to network with people in similar situations.
Konrad, S. C. (2006, January-March). Posttraumatic growth in mothers of children with acquired disabilities. Journal of Loss & Trauma, 11
Stress, burden, and sorrow are not surprising responses for mothers of children who acquire life-altering disabilities. What is largely unforeseen is how maternal caregivers transform in positive ways through trauma and adversity. This article offers first-person accounts from mothers about elements of posttraumatic growth that unexpectedly emerged and coexisted with the rigors and emotional strains of raising their newly physically challenged children. Also noted is the unanticipated potential for growth that occurs in the process of conducting “insider” research.
Kukla, R. (Ed.). (2006, Winter). Maternal bodies [Special issue]. Hypatia, 21
"…[the] essays explore maternal bodies as they are positioned in culture; differentiated; represented; valued as appropriate or inappropriate; constituted in relation to the bodies of fetuses, children, women who are not mothers, and the divine; negotiated in relationship to new technologies; sites of distinctive skills and practices; and sites of agency, responsibility, integrity, and vulnerability (p. viii)." Several essays touch on disability issues, especially Amy Mullin's "Parents and Children: An Alternative to Selfless and Unconditional Love" and Shelley Tremain's "Reproductive Freedom, Self-Regulation, and the Government of Impairment in Utero."
Lalvani, P. (2008, December). Mothers of children with Down syndrome: Constructing the sociocultural meaning of disability. Intellectual and Developmental Disabilities, 46
A qualitative study explored mothers' experience of the birth of a child with Down syndrome within a sociocultural context. Nine mothers of children with Down syndrome were interviewed. Mothers discussed responses to their child's diagnosis as well as negative attitudes toward disability that were displayed by members of the medical community. The narratives highlight the process of meaning-making that these mothers engaged in, their resistance to the dominant discourse on disability, and their eventual transformations in perceptions of disability and motherhood. The study suggests that the meaning of Down syndrome may be culturally embedded and that mothers of children with Down syndrome locate their child's disability within a social environment.
Kuster, P. A., & Badr, L. K. (2006, October). Mental health of mothers caring for ventilator-assisted children at home. In S. P. Thomas (Ed.), Special issue on caregiving. Issues in Mental Health Nursing, 27
The complex management of ventilator-assisted children cared for in the home can place emotional and mental strain on parents, in particular, mothers. The purpose of this study was to explore the relationships among functional status of the child, impact of ventilator-assistance on the family, coping, social support, and depression in mothers caring for ventilator-assisted children at home. Thirty-eight mothers participated in the study. Almost half of the mothers experienced depressive mood symptoms. Impact on family was positively related to depression and social support was inversely related to depression. In addition, social support was a significant predictor of depression. The findings show that the high demands related to the care of ventilator-assisted children can be a significant risk factor for poor mental health outcomes of those mothers providing care at home. Interventions by mental health and pediatric nurses should focus on enhancing mothers' coping skills and assisting mothers in accessing a positive social network to help mediate the stress related to caring for their child.
Landsman, G. (2005, September). Mothers and models of disability. In R. Garland-Thomson & M. S. Holmes (Eds.), Disability and medicine: Beyond the medical model [Special issue]. Journal of Medical Humanities, 26
Based on a qualitative anthropological study of American mothers of infants and young children newly diagnosed with disability, this essay examines how mothers understand their children and define disability in relation to publicly available discourses of disability and identity. In seeking to improve their children's opportunities in mainstream society, mothers appear to comply with the medical model. But over time and in the process of providing meaning to their experience, mothers retool models, drawing both on the social and minority group models rejection of a problem-based definition of disability as inherently caused by impairment and on their own intimate engagement with impairment as an embodied experience.
Landsman, G. (2003, May). Emplotting children's lives: developmental delay vs. disability. In G. L. Jenkins & M. C. Inhorn (Eds.), Reproduction Gone Awry [Feature Issue]. Social Science & Medicine, 56
While it is increasingly possible to envision “perfect” babies, it is not always the case that reproduction actually proceeds according to individual will; for example, there has been no recent reduction in rates of childhood disability. Nevertheless, in most studies of new reproductive technologies, the birth of those children whom few would actively choose—“defective” or disabled infants—is presented only in hypothetical terms. This paper argues for expanding the domain of reproduction to include research on the parenting of children with disabilities. Based on a qualitative research project carried out at a hospital-based newborn follow-up program that serves as an evaluation site determining eligibility for early intervention services for infants and young children with disabilities, this paper focuses on a particular part of women's experience of acquiring new knowledge about personhood and disability, that is, on the period of time when a woman has recently had confirmed that reproduction has, in her case, gone awry. Disability in many cultures, including the United States, diminishes personhood. I suggest that American mothers’ narratives, by utilizing the concept of developmental delay, can assert personhood, or rather, the potential for its future attainment; in doing so, they justify ongoing nurturance of a disabled child in spite of negative attitudes about disability. A particular case of one mother's emplotment of her child's life within a story of developmental delay, in competition with the physician's story of disability, is analyzed. The paper concludes with reflections on how stories of developmental delay told by mothers just encountering a diagnosis of disability may differ from the stories told by those who have experienced mothering a disabled child over time, and on the implications of these differences for the cultural construction of personhood in the United States.
Landsman, G. (2008). Reconstructing motherhood and disability in the age of "perfect" babies.
New York: Routledge.
Examining mothers of newly diagnosed disabled children within the context of new reproductive technologies and the discourse of choice, this book uses anthropology and disability studies to revise the concept of "normal" and to establish a social environment in which the expression of full lives will prevail.
Langer-Gould, A., Huang, S. M., Gupta, R., Leimpeter, A. D., Greenwood, E., Albers, K. B., Van Den Eeden, S. K., & Nelson, L. M. (2009). Exclusive breastfeeding and the risk of postpartum relapses in women with multiple sclerosis. Archives of Neurology, 66
(8), E1-E6. Objective:
To determine if exclusive breastfeeding protects against postpartum relapses of multiple sclerosis (MS) and, if so, whether this protection is related to prolonged lactational amenorrhea. Design:
We conducted structured interviews to assess clinical, menstrual, and breastfeeding history during each trimester and 2, 4, 6, 9, and 12 months postpartum and collected neurological examination findings from the treating physicians of women with MS. Hazards ratios (HRs) were adjusted for measures of disease severity and age. Setting:
Kaiser Permanente Northern California and Stanford University. Participants:
We prospectively enrolled 32 pregnant women with MS and 29 age-matched, pregnant controls. Main Outcome:
Measure Postpartum relapse. Results:
Of the 52% of women with MS who did not breastfeed or began regular supplemental feedings within 2 months postpartum, 87% had a postpartum relapse, compared with 36% of the women with MS who breastfed exclusively for at least 2 months postpartum (unadjusted HR, 5.0; 95% confidence interval, 1.7-14.2; P = .003; adjusted HR, 7.1; 95% confidence interval, 2.1-24.3; P = .002). Sixty percent reported that the primary reason for foregoing exclusive breastfeeding was to resume MS therapies. Women who breastfed exclusively had a later return of menses (P = .001) than women who did not, and lactational amenorrhea was associated with a reduced risk of postpartum relapses (P = .01). Conclusions:
Our findings suggest that exclusive breastfeeding and concomitant suppression of menses significantly reduce the risk of postpartum relapses in MS. Our findings call into question the benefit of foregoing breastfeeding to start MS therapies and should be confirmed in a larger study.
Laurvick, C. L., Msall, M. E., Silburn, S., Bower, C. de Klerk, N., & Leonard, H. (2006, October). Physical and mental health of mothers caring for a child with Rett syndrome. Pediatrics, 118
(4), e1152-e1164. Objectives.
Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome. Methods.
We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental component summary scores as the outcome measures of interest. Mothers (n = 135) of children with Rett syndrome completed the SF-12 measure as part of the Australian Rett Syndrome Study in 2002. The analysis investigated linear relationships between physical and mental health scores and maternal, family, and child characteristics. Results.
Mothers ranged in age from 21 to 60 years and their children from 3 to 27 years. Nearly half of these mothers (47.4%) indicated that they worked full-time or part-time outside the home, and 41% had a combined family (gross) income of <40000 Australian dollars. The resultant model for physical health demonstrated that the following factors were positively associated with better maternal physical health: the mother working full-time or part-time outside the home, having some high school education, having private health insurance, the child not having breathing problems in the last 2 years, the child not having home-based structured therapy, and high scores on the Family Resource Scale (indicating adequacy of time resources for basic and family needs). The resultant model for mental health demonstrated that the following factors were positively associated with better maternal mental health: the mother working full-time or part-time outside the home, the child not having a fracture in the last 2 years, lesser reporting of facial stereotypes and involuntary facial movements, being in a well-adjusted marriage, and having low stress scores. Conclusions.
Our study suggests that the most important predictors of maternal physical and emotional health are child behavior, caregiver demands, and family function.
Lawrence, L. P. (2008). Hardly a walk in the park: examining disability through a mother's eyes. Journal of Loss and Trauma, 13
This essay explores narratives of mothering a child with disabilities. The narratives reflect the author's personal experience raising a disabled child and the experiences of three other mothers also raising children with disabilities. This study takes the reader on a journey of exploration into how mothers of disabled children navigate public spaces that presume normalcy, manage the emotions of raising a nontypical child in a typical world, and learn what it really means to be a mother and a person.
Lea, D. (2006). ‘You don’t know me like that’: Patterns of disconnect between adolescent mothers of children with disabilities and their early interventionists. Journal of Early Intervention, 28
Interest in the concept of collaboration in early intervention has focused primarily on collaboration among professionals or between professionals and families. Few studies have examined patterns of collaboration between early interventionists and families headed by adolescent mothers. This study examined the perspectives and experiences of 6 adolescent mothers and their service providers. Interviews, observations of interactions between service providers and adolescent mothers, and documents such as the Individualized Family Service Plan were analyzed to identify factors that facilitated or hindered effective collaboration. Results are interpreted with respect to a cultural variant perspective and are discussed in terms of their implications for building relationships and providing intervention.
Lederberg, A. R., & Golbach, T. (2002). Parenting stress and social support in hearing mothers of deaf and hearing children: A longitudinal study. Journal of Deaf Studies and Deaf Education, 7
This longitudinal study investigated the impact of child deafness on mothers' stress, size of social networks, and satisfaction with social support. Twenty-three hearing mothers of deaf children and 23 hearing mothers of hearing children completed a series of self-report questionnaires when their children were 22 months, 3, and 4 years old. When children were 22 months, more mothers of deaf children reported pessimism about their children's achieving self-sufficiency and concerns about their children's communication abilities than did mothers of hearing children. When their children were 3 and 4 years old, mothers of deaf and hearing children did not differ in their reports of general parenting stress, as measured by the Parenting Stress Index (PSI). Likewise, mothers' ratings of satisfaction with social support were not affected by child deafness, nor did they change developmentally. Mothers of deaf and hearing children did differ in the types of support networks utilized. Mothers of deaf 22-month-olds reported significantly larger professional support networks, while mothers of hearing children reported significantly larger general support networks across all child ages. Mothers' feelings of stress and satisfaction with social support were very stable across the 2 years examined. The results suggest that most mothers of deaf children do not feel a high level of general parenting stress or dissatisfaction with their lives and support networks. However, mothers of deaf children are likely to feel stress in areas specific to deafness. In addition, because parenting stress was highly stable, special efforts should be made to intervene when mothers of deaf children are expressing high levels of stress.
Lee, E. O., & Oh, H. (2005, September). A wise wife and good mother: Reproductive health and maternity among women with disability in South Korea. Sexuality and Disability, 23
As the first national survey on disability and reproductive health in South Korea, the present study was undertaken to describe experiences and needs related to pregnancy, childbirth, and postnatal care among women with physical disability (WWPD). Using a stratified random sampling method, 410 married WWPD between the ages of 18 and 50 participated in the survey regarding respondents’ socio-demographic profiles, disability-related characteristics, and reproductive health during pregnancy, childbirth, and postnatal care. Findings of this study indicated that most respondents wanted to have a child and perceived child care as possible with appropriate social support. Unlike the conventional wisdom and low societal expectation for these women to perform a maternal role, they gave birth and became caregivers for their child(ren) and family members. This study highlights a wide range of barriers experienced by WWPD with regards to taking care of their reproductive health. Implications for practice and policy are discussed.
Lee, S., Oh, G., Hartmann, H., & Gault, B. (2004, February). The impact of disabilities on mothers' work participation: Examining differences between single and married mothers.
Washington, DC: Institute for Women’s Policy Research. Retrieved March 16, 2005 from http://www.womenphil.org/usr_doc/DisabilityMothersWork.pdf
This study examines the prevalence of disabilities among mothers and children and analyzes how these disabilities influence mothers' work participation. Analyses focus on differences between single and married mothers. The effect of social support coming from family configurations and living arrangements by including the age structures of children with and without a disability, and the number of other adults in the family, are also considered. This research was supported by a Census Bureau Research Development Grant through the Joint Center for Poverty Research at the University of Chicago and Northwestern University.
Leigh, I. W., Brice, P. J., & Meadow-Orlans, K. (2004). Attachment in deaf mothers and their children. Journal of Deaf Studies and Deaf Education, 9
In attachment research, there has been a growing interest in how adults conceptualize their relationships with their own parents as well as in the transmission of attachment status from parent to child and the variables that influence that transmission. The primary goal of the present study was to examine the transmission of attachment from deaf mother to child. Adult Attachment Interviews were collected on 32 deaf women and Strange Situation Procedure data were obtained from their children. While the distribution of deaf mother attachment classifications was similar to that found with hearing samples, the concordance between mother and child in terms of attachment status was lower than in hearing samples. Having a deaf parent did not affect a deaf adult's attachment status. Post hoc analyses suggested a trend towards a dismissing stance in attachment relationships. Results are discussed in terms of variables affecting attachment status as well as the transmission of attachment.
Leiter, V., Krauss, M. W., Anderson, B., & Wells, N. (2004). The consequences of caring: Effects of mothering a child with special needs. Journal of Family Issues, 25
This article broadens our knowledge about family caregiving across the life course by examining caregiving and employment effects experienced by women with children with special needs, using data from a survey conducted in 1998-1999. Almost one fifth of the mothers provide at least 20 hours a week of home health care to these children. More than half of the mothers in the labor force report an employment effect in the form of reducing their hours, and more than half of the mothers at home full-time report ceasing paid employment due to their children’s needs. Experiencing these effects was most strongly associated with the child’s health characteristics. The caregiving provided by mothers of children with special needs occurs at a formative stage of their lives and may be intense and of long duration. These mothers’ experiences should be included in the current research and theories about family caregiving across the life course.
Lemieux, C. (2001). The challenge of empowerment in child protective services: A case study of a mother with mental retardation. Families in Society, 82
This article applies principles of empowerment-oriented practice to interventions with families headed by mothers with mental retardation who come before protective services. Strategies that support empowerment, inclusion, and self-determination are described in a detailed case study, followed by an analysis of the strengths and limitations of practice. Empowerment and advocacy activities, while inherently valuable, are time-consuming and can conflict with the expectations, time frames, and expected outcomes of child protective services. This article concludes with suggestions for social work practice and research to increase knowledge about the experiences of mothers with mental retardation.
LeRoy, B. W., & Johnson, D. M. (2002, December). Open road or blind alley? Welfare reform, mothers, and children with disabilities. Journal of Family and Economic Issues, 23
Welfare reform was examined for 39 Michigan families whose children have significant health or intellectual and behavioral disabilities. As a group, these families received little specialized assistance or services to address their unique needs. Family-cited barriers to self-sufficiency included poorly trained welfare caseworkers, limited public transportation, and inadequate child care. Having an older child was the only discriminating variable between working and non-working mothers. However, working mothers only had temporary positions with no benefits and low pay. All families, whether employed or not, lived below the poverty line.
Lipson, J. G., & Rogers, J. G. (2000). Pregnancy, birth, and disability: Women’s health care experiences. Health Care for Women International, 21
This qualitative study examined the pregnancy, birth and postpartum experiences of 12 women with mobility-limiting physical disabilities. Analysis of semi-structured interviews of one to two hours revealed that the women’s experiences were influenced by their own perspectives and the characteristics of health care system within which they were treated. The woman’s experience included the effect of her disability, her resources, and her personality and approach. Health care system factors included provider attitudes, knowledge about disability and structural and political factors. Implications for health care providers are described.
Little, L. (Ed.). (1999). Spotlight 16: Depressed moms & child development.
Chapel Hill, NC: University of North Carolina at Chapel Hill, National Center for Early Development & Learning (NCEDL). Retrieved March 18, 2005 from http://www.fpg.unc.edu/~ncedl/PDFs/spot16.pdf
This short document contains excerpts from a study reported in the September, 1999 issue of Developmental Psychology
on the effects of mothers’ depression on children. The study, carried out by the National Institute of Child Health & Human Development, is a longitudinal study following more than 1,200 children and families from 10 locations around the US. Begun in 1991, it is one of the most comprehensive on-going child care studies in the nation.
Little, L. (2002, November/December). Differences in stress and coping for mothers and fathers of children with Asperger's syndrome and nonverbal learning disorders. Pediatric Nursing, 28
Research conducted on families of children with disabilities shows that family cohesion and positive family outcomes are influenced by how mothers and fathers cope with raising their child with disabilities. This study was designed to examine stress and coping differences between mothers and fathers (n = 103) of children with Asperger's syndrome (AS) and nonverbal learning disorders (NLD). A repeated measure design was used to compare how mothers and fathers cope with caring for a particular child to control for differences in the severity and nature of the disability across children. Few studies that compare mothers and fathers do so at the couple level. Responses indicated that mothers had higher rates of stress related to family problems and pessimism about their child's future, higher rates of antidepressant use, and higher rates of therapy use than did fathers. Mothers found some coping strategies more helpful than fathers did. Maternal education and child's age also were related to some stress and coping variables. Implications for nurses and future research are discussed.
Llewellyn, G., McConnell, D., Cant, R., & Westbrook, M. (1999, March). Support network of mothers with an intellectual disability: An exploratory study. Journal of Intellectual & Developmental Disability, 24
This paper addresses the characteristics of the support networks of mothers with intellectual disability who, as a group, are among the most socially isolated mothers in Australian society. Mothers' support networks were defined as the core of their social networks, that is, who provides help to mothers and to whom they can turn to for help. Semi-structured interviews were conducted with 25 mothers in a large metropolitan city to identify - from the mother's perspective - who they identify as their support people. Qualitative and quantitative analyses of the data revealed three distinct types of support networks based on mothers' living arrangements as follows: mothers living in a parent/parent figure household, mothers living alone with their child/children, and, mothers living with a partner in their own household. Because mothers in each network type experience varying frequency of support, differing proportions of informal and formal support people, differing degrees of reciprocity in their relationships and the nature of the support experienced varies, the need for considering maternal living arrangements prior to determining professional involvement in mothers' lives is emphasized.
Llewellyn, G., McConnell, D., & Mayes, R. (2003, February). Health of mothers with intellectual limitations. Australian and New Zealand Journal of Public Health, 27
The health status of 50 mothers with intellectual limitations in metropolitan Sydney was assessed during the baseline assessment phase of a randomized controlled trial of a parent education program. Self-reported material health was significantly worse than women’s health in the Australian population. Controlling for socioeconomic status, mothers’ health remained significantly worse on four of the eight subscales. The findings suggest that mothers with intellectual limitations are particularly at risk for poor health status. An urgent need exists for policy and service initiatives to address health status of this group of vulnerable mothers.
Lloyd, T. J., & Hastings, R. (2009, December). Hope as a psychological resilience factor in mothers and fathers of children with intellectual disabilities
In M. Broberg, J. Blacher, & E. Emerson (Eds.), Resilience and People with Intellectual Disabilities [Special Issue]. Journal of Intellectual Disability Research, 53
(12), 957-968. Background:
Positive psychology is an area gaining credence within the field of intellectual disability (ID). Hope is one facet of positive psychology that is relatively unstudied in parents of children with ID. In the present study, we explore hope and its relationships with parental well-being in parents of school-aged children with ID. Method:
A total of 138 mothers and 58 fathers of children with ID took part in a questionnaire-based study. Parents reported on their feelings of hope and positive affect, other dimensions of psychological well-being (anxiety, depression and stress), and on their child's behaviour. For this study, hope was measured as a goal driven behaviour comprising two components: agency (the perception that one can reach his/her goals) and pathways (the perception that one can find alternative routes to reach these goals should the need arise). Results:
For mothers, regression analyses revealed that lower levels of hope (agency and pathways) and more child behaviour problems predicted maternal depression. Positive affect was predicted by less problematic child behaviour and by higher levels of hope agency. For fathers, anxiety and depression were predicted by low hope agency and positive affect was predicted by high hope agency. Hope pathways was not a significant predictor of paternal well-being. Hope agency and pathways interacted in the prediction of maternal depression such that mothers reporting high levels of both hope dimensions reported the lowest levels of depressive symptoms. Conclusions:
Hope is a construct that merits further investigation within families research, and is potentially a factor that could be utilised in intervention to help increase familial well-being.
Lloyd, C. M., & Rosman, E. (2005, July/September). Exploring mental health outcomes for low-income mothers of children with special needs: Implications for policy and practice. Infants & Young Children. 18
Research has indicated that there is a heightened risk for the occurrence of childhood disabilities in single-parent-female-headed households that are living at or below the poverty line. Research also demonstrates increased levels of parenting stress and parenting depression among mothers who have children with special needs. However, very little is currently known about mental health outcomes among women who are poor and raising children with disabilities. To work effectively with these caregivers, human service professionals must utilize multifaceted approaches based on an ecological framework to address the multitude of challenges that these families face. This article draws upon ecological theory and a case study to examine the ways that having a child with special needs impacts women's emotional well-being and their ability to function in roles they deem appropriate for their children. The case study highlights current policies and the ways in which they may exacerbate caretakers' mental health issues. It also provides a framework to identify and demonstrate the ways in which an ecological approach is useful in looking outside the individual and the family to understand the processes through which other systems may interact with the family to affect maternal mental health. Finally, specific links are drawn to both policies and practice.
Longley, K. (2002). Fibromyalgia & pregnancy.
Stourbridge, UK: Fibromyalgia Association UK. Retrieved March 16, 2005 from http://www.fibromyalgia-associationuk.org/Fibromyalgia%20&%20Pregnancy.pdf
The author, who has fibromyalgia, offers information and tips for women with fibromyalgia who wish to become pregnant.
Lundwall, R. A. (2002). Parents' perceptions of the impact of their chronic illness or disability on their functioning as parents and on their relationships with their children. The Family Journal, 10
This article reports on an exploratory study. Seventeen parents, self-reporting a chronic illness or disability, responded on the Internet to a questionnaire developed from grounded theory techniques. Their perceptions were collected both on their ability to parent and on their relationships with their children. Follow-up interviews were conducted with 6 participants by telephone. Overarching themes that emerged were that with the chronic illness or disability, (a) there occurred more negative than positive changes;(b) reduced personal power occurred in several contexts, including in family role changes;(c) parents worry about family coping; and (d) there is more interest in family counseling than in support groups. Implications for Internet support groups, psychoeducation on the Internet, and future research are discussed.
Macias, M. M., Saylor, C. F., Haire, K. B., & Bell, N. L. (2007). Predictors of paternal versus maternal stress in families of children with neural tube defects. Children's Health Care, 36
This study examined the types of stress experienced by maternal and paternal caretakers of children with Neural Tube Defects (NTD) and examined child and family characteristics that correlated with stress. Participants were 71 two-parent families of a child with spina bifida. Parents completed the Parenting Stress Index-Short Form to measure types of stress. Additional measures were completed to investigate variables potentially related to reported stress. Fathers reported significantly higher levels of stress from dysfunctional parent-child interaction. Mothers' personal stress correlated with disability and medical characteristics of the child. Fathers reported more stress when the child had maladaptive behaviors and when experiencing fewer social supports and resources. Mothers and fathers coparenting a child with NTD have both common and unique stresses. It is important that both be included in parent support and education initiatives.
Magana, S., Parish, S. L., & Cassiman, S. A. (2008). Policy lessons from low-income mothers with disabilities. Journal of Women, Politics & Policy, 29
This focus group study examined the impact of income transfer programs such as Supplemental Security Income and the Wisconsin Caretaker Supplement from the perspective of low-income mothers with disabilities who are recipients of these programs. Participants reported that these programs were inadequate to meet their basic day to day needs in raising their children. Problems related to policy implementation identified by the women included inconsistently applied program rules, inadequate benefit levels, and confusion over work requirements as they affect benefits. Policy implications and recommendations for improving the quality of life for this population are discussed.
Magaña., S., Seltzer, M. M., & Krauss, M. W. (2004, February). Cultural context of caregiving: Differences in depression between Puerto Rican and non-Latina white mothers of adults with mental retardation. Mental Retardation, 42
Differences in depression between Puerto Rican and non-Latina White mothers providing care to their adult child with mental retardation were examined. The focus of this study is on how family problems may mediate the effect of the adult's behavior problems on the mother's level of depressive symptoms and how this process differs across the two groups of mothers. As hypothesized, family problems was a stronger predictor of depressive symptoms for Puerto Rican mothers than for non-Latina White mothers. In addition, Puerto Rican mothers were in poorer physical health, which further accounted for differences in depression between the two groups.
Malacrida, C. (2002). Alternative therapies and Attention Deficit Disorder: Discourses of maternal responsibility and risk. Gender & Society, 16
In response to controversies about Attention Deficit Disorder (ADD) and Ritalin, many alternative therapies have proliferated in professional and lay circles. This study examines alternative therapy discourse and asks whether these texts offer any real challenge to traditional discourses of medicalized motherhood. Indeed, alternative therapies employ most of medicine's discursive strategies, portraying mothers as inadequate and responsible for their children's problems and positioning the child as both at risk and a danger to society. Furthermore, the speculative causal factors and the lengths to which mothers are encouraged to go in alternative therapy texts place a heavier burden on women than do traditional medical texts. Thus, while the medical treatment for ADD might be challenged, alternative therapy discourse supports the legitimacy of ADD as a diagnostic category, argues that its causes are personal and gendered, and claims that professional intervention remains the proper response.
Malacrida, C. (2003). Cold comfort: Mothers, professionals, and Attention Deficit (Hyperactivity) Disorder.
Toronto: University of Toronto Press.
Mothers of children with Attention Deficit Disorder must inevitably make decisions regarding their children's diagnosis within a context of competing discourses about the nature of the disorder and the legitimacy of its treatment. They also make these decisions within an overriding climate of mother-blame. Claudia Malacrida's Cold Comfort
provides a contextualized study of how mothers negotiate with/against the 'helping professions' over assessment and treatment for their AD(H)D children.
Malacrida counters current conceptions about mothers of AD(H)D children (namely that mothers irresponsibly push for Ritalin to manage their children's behaviour) as well as professional assumptions of maternal pathology. This thought-provoking examination documents Malacrida's extensive interviews with mothers of affected children in both Canada and the United Kingdom, and details the way in which these women speak of their experiences. Malacrida compares their narratives to national discourses and practices, placing the complex mother-child and mother-professional relations at the centre of her critical inquiry.
Drawing on both poststructural discourse analysis and feminist standpoint theory, Malacrida makes a critical contribution to qualitative methodologies by developing a feminist discursive ethnography of the construction of AD(H)D in two divergent cultures. On a more personal level, she offers readers a moving, nuanced, and satisfying examination of real women and children facing both public and private challenges linked to AD(H)D.
Malacrida, C. (2009, January). Performing motherhood in a disablist world: Dilemmas of motherhood, femininity and disability. In Disability Arts, Culture and Politics: New Epistemologies for Qualitative Research [Special issue]. International Journal of Qualitative Studies in Education, 22
Women are expected to aspire to norms of femininity that include ideal motherhood, where mothers are positioned as ever available, ever nurturing providers of active, involved and expert mothering - indeed, being a caregiver is a master status for adult women in modernity. While this may be the case for all women, mothers who are disabled can have more a complicated relationship to ideal motherhood than others, because they are perceived of either as asexual and inappropriate to the role of motherhood, or conversely because they are seen as sexually victimized and at risk. This study examines the contradictions and tensions embedded in disabled mothers' performances of ideal motherhood, drawing on qualitative interviews with 43 Canadian mothers with a variety of disabilities. The article examines how women with disabilities reconcile the demands of ideal mothering against the realities of their disabilities. I ask how these women perform motherhood in ways that will undermine or challenge the perceptions of others. It also attends to the ways that normative orders relating to femininity and motherhood are embedded in mothers' social interactions with peers, helping professionals and structures such as funding and care provision policies. Despite these barriers, however, women with disabilities go to creative and extraordinary lengths in order to be seen as complying with ideal motherhood, perhaps as a way to lay claim to a maternal and sexual identity that society frequently denies them. The experiences of mothers with disabilities as they negotiate the tensions of ideal motherhood permit us to see the challenges this construct poses for all women, and thus they call for a feminist politics that will challenge this ideal and work for change in the lived experiences of mothering.
Mathews, J. (1992). A mother's touch: The Tiffany Callo story.
New York: Henry Holt & Co.
This is a biography of one woman with cerebral palsy and her struggle to regain custody of her two children. It depicts the bias that society and the justice system have had about persons with disabilities and parenting. The book culminates with the passage of legislation that protects the rights of parents with disabilities.
McCarthy, M. (in press). Exercising choice and control – Women with learning disabilities and contraception. British Journal of Learning Disabilities Early View.
This research project used semi-structured in-depth interviews to ask women with learning disabilities about the experience of being prescribed contraception. It also asked general practitioners about their prescribing practices through a postal survey. A service user group was involved at different stages of the project. Most of the women reported that it was other people who made the key decisions about starting to use contraception and which method to use. Both the women and the doctors said they liked having a third party (staff member or relative) present for the consultations. Many of the doctors were unclear about responding to issues of capacity to consent to treatment. An accessible research summary was produced to make the process and findings of the research available to the women with learning disabilities who took part in the study, as well as to any others who were interested (see Disability and Society, 24
, 357–371, 2009). In the interests of disseminating that accessible report as widely as possible, extracts are included in this article, and the full version is available from the author.
McConnell, D., Dalziel, A., Llewellyn, G., Laidlaw, K., & Hindmarsh, G. (2009, March). Strengthening the social relationships of mothers with learning difficulties. British Journal of Learning Disabilities, 37
Mothers with learning difficulties are often isolated within their local communities. They also report low levels of social support. Social disconnection is associated with high levels of stress and poorer mental health, and in turn, adverse parenting and child outcomes. In the study reported here, a multi-site, intervention group only, repeated measures research design was employed to determine the efficacy of a group-based, adult-learning programme designed to strengthen the social relationships and improve the psychological wellbeing of mothers with learning difficulties. Thirty-two mothers with learning difficulties completed the programme across six sites in Australia. The effects of the programme on perceived social support and psychological wellbeing were substantially greater than established benchmarks for parent-training and family support programmes. These promising findings warrant further investigation, ideally employing a randomised-controlled trial design.
McConnell, D., Mayes, R., & Llewellyn, G. (2008, June). Pre-partum distress in women with intellectual disabilities. Journal of Intellectual & Developmental Disability, 33
(2), 177-183. Background:
This study investigates depression, anxiety and stress in pregnant women with intellectual disabilities and/or self-reported learning difficulties, and examines the association between these negative emotional states and perceived support and conflict in the women's interpersonal relationships. Method:
Eight-hundred-and-seventy-eight women attending their first antenatal visit in a socioeconomically disadvantaged area of Sydney, Australia during a 5-month period in 2002 completed a brief questionnaire to identify those with intellectual disabilities (ID) and/or self-reported learning difficulties. These 57 women were then invited to participate in a series of three interviews (two pre- and one post-partum). The second interview, which was conducted with 31 women in their third trimester, incorporated standard measures of depression, anxiety and stress, and support and conflict in interpersonal relationships, and is the subject of the research reported here. Results:
More than one-third of the women interviewed reported moderate to severe depression, anxiety and stress. A significant association was found between depression and both perceived support and conflict in interpersonal relationships. Stress was associated with conflict but not with either perceived support. Anxiety was not significantly associated with either perceived support or conflict. Conclusions:
Negative emotional states in this population of women may be confounded with their cognitive deficits. Routine antenatal screening for negative emotional states is therefore recommended to ensure that the mental health care needs of women with ID and/or self-reported learning difficulties are not overlooked.
McConnell, D., Mayes, R., & Llewellyn, G. (2008, June). Women with intellectual disability at risk of adverse pregnancy and birth outcomes. Journal of Intellectual Disability Research, 52
(6), 529-535. Background:
An increasing number of women with intellectual disability (ID) have children. Cross-sectional, clinical population data suggest that these women face an increased risk of delivering preterm and/or low birthweight babies. The aim of this study was to explore the prevalence of poor pregnancy and birth outcomes in women with ID and/or self-reported learning difficulties in an antenatal population. Methods:
A total of 878 pregnant women attending their first antenatal clinic visit were `screened' for ID. Pregnancy and birth outcomes data were extracted from medical records post-partum. These data included pregnancy-related health conditions, including pre-eclampsia and gestational diabetes, and birth outcomes, including gestational age, birthweight, Apgar score and admission to neonatal intensive care and/or special care nursery. Results:
A total of 57 (6.5%) pregnant women with ID and/or self-reported learning difficulties were identified. These women experienced an unusually high rate of pre-eclampsia (odds ratio = 2.85). Their children more often had low birthweights (odds ratio = 3.08), and they were more frequently admitted to neonatal intensive care or special care nursery (odds ratio = 2.51). Conclusion:
Further research is needed to understand the reasons for the adverse findings of this study and identify potentially changeable factors contributing to adverse pregnancy and birth outcomes for women with ID and/or self-reported learning difficulties and their children. To ensure quality antenatal care, health professionals may need to consider innovations such as extended consultation times, communication aids and audio-taping consultations.
McConnell, D., Llewellyn, G., Mayes, R., Russo, D. & Honey, A. (2003, June). Developmental profiles of children born to mothers with intellectual disability. Journal of Intellectual and Developmental Disability, 28
The developmental status of 37 pre-school aged children born to mothers with intellectual disability was assessed and the relationship between developmental status and selected child, maternal and home/environment characteristics was examined. The developmental status of the children varied markedly. Controlling for possible organic pathology, the development of these children did not vary significantly from age-norm expectations in four domains: physical, self-help, social and academic. No statistically significant correlation was found between developmental status and characteristics of the mother or home/environment. The key to prevention may lie in the provision of suitable antenatal and maternity services to ensure the best possible birth outcomes.
McKay-Moffat, S., & Cunningham, C. (2006, August). Services for women with disabilities: mothers’ and midwives’ experiences. British Journal of Midwifery, 14
Only a limited amount is known about the childbirth experiences of m thers with disabilities and even less about the experiences of midwives providing such services. To obtain details about experiences semi-structured interviews were carried out with five mothers with mobility limiting disabilities and eight midwives. The five themes from mothers: The quest for normality and independence, the disability as paramount, midwives’ lack of disability knowledge, the need for midwives to have disability awareness and positive attitudes, and the importance of effective communication. Three themes from the midwives were: The midwives’ varied knowledge and experiences and how this influenced their feelings, midwives generally positive attitudes towards the mothers, and challenges to effective communication. Midwives need the opportunity to enhance their knowledge and helping skills whilst taking a proactive approach to care and maternity service provision for this small but increasing group.
McKeever, P., Angus, J., Lee-Miller, K., & Reid, D. (2003, March). 'It's more of a production': Accomplishing mothering using a mobility device. Disability & Society, 18
This qualitative study investigated the conditions and experiences of mothers who used wheelchairs and scooters for full-time mobility. In focused, open-ended interviews, 11 mothers of children aged 6 months to 18 years described sociospatial obstacles and facilitators that influenced how they cared for their children and homes. Results suggest that mothering with a disability consists of embodied and emplaced practices. Women often felt 'out of place' as mothers given the relationship between mothering discourse and mobility devices. Furthermore, the embeddedness of mothering in place meant that the social and material conditions of place served not only as antecedents to mothering challenges, but also structured possible solutions.
McLaughlin, J. (2003, August 20-24). Screening networks: Shared agendas in feminist and disability movement challenges to antenatal screening and abortion.
Paper presented at Gender and Power in the New Europe, the 5th European Feminist Research Conference, Lund University, Sweden. Retrieved March 31, 2005 from http://www.5thfeminist.lu.se/filer/paper_352.pdf
“In various debates and issues non-disabled feminists have been rightly criticised for advocating ideas that are problematic for disabled people and counter to the principles of the disability movement. …While feminists working within disability studies…have developed greater dialogue between feminist frameworks and disability studies, reproductive rights remain an important point of contention between the two approaches.”
McLearn, K. T., Minkovitz, C. S., Strobino, D. M., Marks, E., & Hou, W. (2006, July). The timing of maternal depressive symptoms and mothers' parenting practices with young children: Implications for pediatric practice. Pediatrics, 118
(1), 174-182. Background.
The prevalence of maternal depressive symptoms and its associated consequences on parental behaviors, child health, and development are well documented. Researchers have called for additional work to investigate the effects of the timing of maternal depressive symptoms at various stages in the development of the young child on the emergence of developmentally appropriate parenting practices. For clinicians, data are limited about when or how often to screen for maternal depressive symptoms or how to target anticipatory guidance to address parental needs. Purpose.
We sought to determine whether concurrent maternal depressive symptoms have a greater effect than earlier depressive symptoms on the emergence of maternal parenting practices at 30 to 33 months in 3 important domains of child safety, development, and discipline. Methodology.
Secondary analyses from the Healthy Steps National Evaluation were conducted for this study. Data sources included a self-administered enrollment questionnaire and computer-assisted telephone interviews with the mother when the Healthy Steps children were 2 to 4 and 30 to 33 months of age. The 30- to 33-month interview provided information about 4 safety practices (ie, always uses car seat, has electric outlet covers, has safety latches on cabinets, and lowered temperature on the water heater), 6 child development practices (ie, talks daily to child while working, plays daily with child, reads daily to child, limits child television and video watching to <2 hours a day, follows 3 daily routines, and being more nurturing), and 3 discipline practices (ie, uses more reasoning, uses more harsh punishment, and ever slapped child on the face or spanked the child with an object). The parenting practices were selected based on evidence of their importance for child health and development, near complete data, and sample variability. The discipline practices were constructed from the Parental Response to Misbehavior Scale. Maternal depressive symptoms were assessed using a 14-item modified version of the Center for Epidemiologic Studies-Depression Scale. Multiple logistic regression models estimated the effect of depressive symptoms on parenting practices, adjusted for baseline demographic characteristics, Healthy Steps participation, and site. No significant interactions were found when testing analytic models with dummy variables for depressive symptoms at 2 to 4 months only, 30 to 33 months only, and at both times; reported models do not include interaction terms. We report main effects of depressive symptoms at 2 to 4 and 30 to 33 months when both are included in the model. Results.
Of 5565 families, 3412 mothers (61%) completed 2- to 4- and 30- to 33-month interviews and provided Center for Epidemiologic Studies-Depression Scale data at both times. Mothers with depressive symptoms at 2 to 4 months had reduced odds of using car seats, lowering the water heater temperature, and playing with the child at 30 to 33 months. Mothers with concurrent depressive symptoms had reduced odds of using electric outlet covers, using safety latches, talking with the child, limiting television or video watching, following daily routines, and being more nurturing. Mothers with concurrent depressive symptoms had increased odds of using harsh punishment and of slapping the child on the face or spanking with an object. Conclusions.
The study findings suggest that concurrent maternal depressive symptoms have stronger relations than earlier depressive symptoms, with mothers not initiating recommended age-appropriate safety and child development practices and also using harsh discipline practices for toddlers. Our findings, however, also suggest that for parenting practices that are likely to be established early in the life of the child, it may be reasonable that mothers with early depressive symptoms may continue to affect use of those practices by mothers. The results of our study underscore the importance of clinicians screening for maternal depressive symptoms during the toddler period, as well as the early postpartum period, because these symptoms can appear later independent of earlier screening results. Providing periodic depressive symptom screening of the mothers of young patients has the potential to improve clinician capacity to provide timely and tailored anticipatory guidance about important parenting practices, as well as to make appropriate referrals.
McMahan, J. (2005, March). The morality of screening for disability. Reproductive BioMedicine Online, 10
(Supp. 1), 129-132.
Many people object to preimplantation or prenatal screening for disability on the grounds that it is discriminatory, has pernicious effects on the lives of existing disabled people, expresses a hurtful view of disabled people, and reduces human diversity. I argue that if these objections are held to be strong enough to show that screening is wrong, they must also imply the permissibility of causing oneself to have a disabled rather than a non-disabled child. Indeed, those who object to screening on these grounds and also claim that it is not worse to be disabled than not to be, seem to be committed to accepting the permissibility of deliberately causing disabling prenatal injury, even for frivolous reasons. If we cannot accept these implications, we cannot accept that the objections to screening show that it is wrong. This is from a supplement on "Ethics, Law and Moral Philosophy of Reproductive Biomedicine."
McNary, M. E. (1999). Themes arising in the motherhood decision for women with multiple sclerosis: An exploratory study. Journal of Vocational Rehabilitation, 12
The author examines the motherhood decisions of four women with multiple sclerosis (MS). Themes arising in the decision to become a mother, to remain childless, or to enlarge an existing family are identified. Implications for program development and future research are discussed.
McPherson, M. D., Delva, J., & Cranford, J. A. (2007, May). A longitudinal investigation of intimate partner violence among mothers with mental illness. Psychiatric Services, 58
(5), 675-680. Objective:
Severe mental illness, substance use, and intimate partner violence have emerged as major intersecting public health problems that adversely and disproportionately impact the lives of women in the United States. This longitudinal study investigated the demographic and clinical correlates of intimate partner violence in a sample of 324 mothers with severe mental illness. Methods:
A secondary analysis of longitudinal data was conducted by using multiple logistic regression. Participants were part of a longitudinal, community-based study of mothers with severe mental illness, which was aimed at understanding how these mothers viewed motherhood. The women were interviewed initially at baseline (interviews were conducted between 1995 and 1996) and then about 20 months later at follow-up (interviews were conducted between 1997 and 1998). Results:
At follow-up the prevalence rate of intimate partner violence was 19%. Multiple logistic regression analyses showed a significant positive relationship between alcohol and drug misuse at baseline and intimate partner violence at follow-up, indicating that women with a co-occurring diagnosis of a substance use disorder (dual diagnosis) were more likely than women without such a diagnosis to report intimate partner violence. The number of lifetime psychiatric hospitalizations and the number of symptoms related to psychiatric disability exhibited at baseline were positively associated with intimate partner violence at follow-up, and age was inversely associated with intimate partner violence. Conclusions:
Mental health professionals serving mothers with mental health problems need to be aware of and prepared to assess the significant correlation between these intersecting public health problems in order to influence successful interventions. Particular attention must be given to the special treatment needs related to dual diagnosis and victimization and the impact of these factors on this vulnerable population.
Milagros Santos, R., & McCollum, J. A. (2007). Perspectives of parent-child interaction in Filipino mothers of very young children with and without disabilities. Journal of Early Intervention, 29
This study was designed to expand understandings about Filipino mothers’ daily interactions with their infants and toddlers with and without disabilities. Qualitative procedures were used to analyze transcripts from structured, open-ended interviews with mothers of 10- to 26-month-old children. Three themes were used to characterize and compare mothers of children with and without disabilities. Similarities and differences emerged with respect to maternal roles during parent-child interaction, contexts of interaction, and sources of influence on interaction. Across themes, a cohesive cluster of responses also characterized descriptions of interactions among a subgroup of mothers whose children had the most significant, readily identifiable, disabilities.
Milliken, P. J. (2001, January-February). Disenfranchised mothers: Caring for an adult child with schizophrenia. Health Care for Women International, 22
Interviews with 29 parent caregivers of adult children with schizophrenia discovered that they periodically redefine their parental role over the course of the family member's illness. A grounded theory of "redefining parental identity" is briefly reviewed. As the child's schizophrenia develops, parents come to regard themselves as disenfranchised. That is, although parents assume the right to take on responsibility for their family member, neither the legal system, mental health practitioners, nor often the ill persons themselves recognize that right. Particularly for the 16 mothers who tend to be the primary family caregivers, this lack of parental rights negatively affects their caregiving experience, especially as regards their caregiver stress, their experience of guilt and grief, and ultimately their own health.
Militiades, H. B., & Pruchno, R. (2001). Mothers of adults with developmental disability: Change over time. American Journal on Mental Retardation, 106
Predictors of formal service utilization, waiting list use, and caregiving burden were assessed over a 4-year time period for 305 mothers of an adult child. Results indicate that caregiving burden at follow-up is predicted by residential status, burden, child behaviors at baseline, and child placement. Formal service use at follow-up is predicted by formal service use, child behaviors, co-residence at baseline, and child placement. Waiting list use at follow-up is predicted by waiting list use, burden, co-residence at baseline, and child placement. Placement outside the mother's home is predicted by co-residence, mother's functional ability, and waiting list use at baseline. Findings suggest that waiting list use and placement are aspects of an evolving process rather than discrete events.
Mitchell, D. B., & Hauser-Cram, P. (2008, March-April). The well-being of mothers of adolescents with developmental disabilities in relation to medical care utilization and satisfaction with health care. Research in Developmental Disabilities, 29
Parents of children with disabilities have been found to be more likely to experience stress and depressive symptoms than parents of typically developing children as a result of the increased challenges inherent in their parenting role. This study investigated the utilization of and satisfaction with adolescent health care services reported by mothers and their relation to maternal well-being. Participants included 73 mothers and their adolescents with developmental disabilities who had been recruited as infants and toddlers from early intervention programs to participate in a longitudinal investigation, the Early Intervention Collaborative Study. Data were collected through parent reports and structured assessments with adolescents. Regression analyses were conducted to test whether utilization and maternal satisfaction with care related to maternal depressive symptoms or parenting stress after controlling for child and family characteristics. The results demonstrated that both utilization and maternal satisfaction with health care added unique variance in predicting lower levels of maternal stress and depressive symptoms.
Montes, G., & Halterman, J. S. (2007). Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics, 119
(5), e1040-e1046. Objectives:
Studies suggest that having a child with autism has a negative impact on maternal psychological functioning, but no large-scale, population-based studies are available. The objectives of this study were to (1) describe the psychological functioning, physical and mental health, family communication, and parenting support of mothers of a child with autism compared with other mothers on a population basis and (2) assess the independent relationship between having a child with autism and these outcomes, controlling for the child's social skills and demographic background. Methods:
Mothers of 61772 children who were 4 to 17 years of age were surveyed by the National Survey of Children's Health, 2003. Autism was measured from an affirmative maternal response to the question, "Has a doctor or health professional ever told you your child has autism?" There were 364 children with autism in the sample. Results:
Mothers of a child with autism were highly stressed and more likely to report poor or fair mental health than mothers in the general population, even after adjustment for the child's social skills and demographic background. However, mothers of a child with autism were more likely to report a close relationship and better coping with parenting tasks and less likely to report being angry with their child after adjustment for the child's social skills and demographic background. Having a child with autism was not associated with lower social support for parenting, an altered manner in which serious disagreements were discussed in the household, or increased violence in the household. Conclusion:
Mothers of children with autism showed remarkable strengths in the parent–child relationship, social support, and stability of the household in the context of high stress and poorer mental health.
"Moving forward" - Sterilisation and reproductive health of women and girls with disabilities.
(2001, July). Tasmania, Australia: Women with Disabilities Australia.
This report is the culmination of a National Project conducted by Women With Disabilities Australia (WWDA) during 2001. The report provides a context for the discussion of sterilisation and reproductive health of women and girls with disabilities.
Mowbray, C. T., Bybee, D., Hollingsworth, L., Goodkind, S., & Dapha, O. (2005, March). Living arrangements and social support: Effects on the well-being of mothers with mental illness. Social Work Research, 29
This article examines the effects of living arrangements on the well-being of mothers with a serious mental illness. Analyses of data from a National Institute of Mental Health-funded study of an urban, primarily African American sample of 379 mothers with mental illness revealed few differences in parenting or social functioning between mothers living with their children and a spouse or partner and those living with their children only. However, mothers living with their children and extended family had significantly better outcomes than women in the other two living arrangements. Structural equation modeling analyses indicated that living with relatives significantly related to mothers' well-being (social functioning and parenting) above and beyond relatives' provision of social support. Multilevel modeling revealed racial differences in the effects of living with relatives on functioning and parenting stress: Effects were positive for African American mothers but mixed for white American mothers.
Mowbray, C., Schwartz, S., Bybee, D., Spang, J., Rueda-Riedle, A., & Oysterman, D. (2000). Mothers with a mental illness: Stressors and resources for parenting and living. Families in Society, 81
Policy changes as well as improved treatment and rehabilitation practices mean that more women with mental illness are carrying out parenting roles. However, mental-health services have only given limited attention to parenting problems and benefits for clients with psychiatric disabilities. Previous research has focused more on mothers' clinical characteristics, and less on the social and economic contexts in which parenting occurs. The present report involves a large, primarily minority sample of women with serious mental illness who are mothers and who are being served in the public mental-health system of a large urban area. We sought to collect more comprehensive information to better understand their situations and improve service provisions. The women in the study report experiencing severe financial strains and health problems, even when compared with other low-income, urban-based populations. Many also have experienced crises, loss of significant others, assaults, and other negative life events that are very stressful, along with a high number of chronic hassles. They do have resources available to them, through interpersonal supports, religion, and mental-health services. The discussion focuses on implications for micro- and macro-practice to improve these women's lives, their parenting, and the potential outcomes of their children.
Mullin, A. (2006, Winter). Parents and children: An alternative to selfless and unconditional love. In R. Kukla (Ed.), Maternal Bodies [Feature issue]. Hypatia, 21
I develop a model of love or care between children and their parents guided by experiences of parents, especially mothers, with disabilities. On this model, a caring relationship requires both parties to be aware of each other as a particular (not interchangeable) person and it requires reciprocity. This does not mean that children need to be able to articulate their interests, or that they need to be self-reflectively aware of their parents' interests or personhood. Instead, parents and children manifest their understanding of one another as unique, irreplaceable individuals, with identifiable needs and interests through their interactions with one another.
Najarian, C. G. (2004). 'Between worlds': How college educated deaf women negotiate education, mothering, and work.
Unpublished doctoral dissertation, Syracuse University, Syracuse, NY.
This qualitative study investigates the everyday lives of college educated deaf women in their family, educational, mothering and activism, and paid work experiences. The study is based on life history research with ten deaf women in two different cities in the northeast. The data reveal the seemingly "invisible" and often visible work involved as these women negotiate places for themselves and resist various obstacles in their paid and unpaid work lives. The women develop strategies to negotiate being part of the deaf world, hearing world, or somewhere, as they describe, "in between." Despite being educated orally and usually forbidden to learn sign language in their early years, the women are often tracked into working in deaf work environments, specifically into teaching professions. As part of their mothering and activist work, the women also make political decisions about their identities as well as those of their children when they make decisions about how to communicate in their families. The study also shows how institutions such as schools, families, and workplaces shape the women's work experiences and their identities. By uncovering the life experiences of these deaf women, these findings have implications for our education programs and hiring procedures.
Najarian, C. G. (2006, June). Deaf mothers, maternal thinking and intersections of gender and ability. In R. Traustadóttir (Ed.), Gender and Disability [Special issue]. Scandinavian Journal of Disability Research, 8
This paper investigates the mothering experiences of college-educated Deaf women and connects this to their identities as part of the Deaf community. Using feminist life history interviews with ten Deaf women, the analysis focuses on their work as mothers and the connections with “maternal thinking,” difference and sameness. Discussions about wanting hearing or deaf children and communication with children influenced their identities and were part of the disciplined practice of this work. The women developed strategies to “normalize” experiences and viewed themselves as a linguistic minority. They made political decisions when using American Sign Language, English, or both and resonated with the Deaf community, hearing world, or “in between.” They worked to ensure the acceptability of their children as well as themselves. The author argues that an analysis of ability along with gender is useful to further current theorizing about gender and mothering as a kind of work.
Nelson, A. M. (2002). A metasynthesis: Mothering other-than-normal children. Qualitative Health Research, 12
The author used Noblit and Hare’s 1988 comparative method of synthesizing qualitative studies to address the need for collective knowledge development related to mothering other than-normal children. Twelve studies were included in a metasynthesis for a total sample of 79. The nature of the child’s disability, demographics, and methodology used varied widely. Initially, 13 common themes were extracted using reciprocal translation. Further analysis revealed 4 steps common to the mothering experience under which themes were categorized. Suggestions for application to practice include keeping in mind qualities of a supportive health professional from the mothers’ perspective, encouraging mothers to challenge societal definitions of normalcy, and recognizing the significance of hope in fueling maternal caregiving.
Neville-Jan, A. (2004, March). Selling your soul to the devil: An autoethnography of pain, pleasure and the quest for a child. Disability & Society, 19
In this article I present an autoethnography in the form of a quest narrative linked as a self-reflexive text to my continuing research of children and adults with spina bifida. My story centers on the themes of chronic illness, pain and sexuality, highlighting gaps in the literature related to these topics. I narrate my story as a manifesto for women with physical impairments to break their silence and talk about their sexuality. I recommend autoethnography as a method of understanding disability as embodied. Faustus: Now tell me, what says Lucifer thy lord? Mephistopheles: That I shall wait on Faustus whilst he lives, So he will buy my service with his soul. (Christopher Marlowe, Dr Faustus)
Nicholson, J., & Henry, A. D. (2003). Achieving the goal of evidence-based psychiatric practices for mothers with mental illnesses. Psychiatric Rehabilitation Journal, 27
Article presents the rationale for standardized interventions that have been shown to improve outcomes for mothers with psychiatric disorders, as measured objectively in research conducted by independent investigators. Suggestions for relevant interventions are derived from the recommendations of mothers with a mental illness, generic parent intervention models, interventions specifically developed for mothers with a mental illness, and evidence-based practices proven effective with adults with mental illness. The value of a psychiatric rehabilitation approach and the challenges inherent in documenting and testing interventions are discussed.
Noojin, A. B., & Wallander, J. L. (1997). Perceived problem-solving ability, stress, and coping in mothers of children with physical disabilities: Potential cognitive influences on adjustment. International Journal of Behavioral Medicine, 4
Examined the contribution of perceived problem-solving ability to the adjustment of mothers of children with a physical disability, in conjunction with appraised disability-related stress and approach and avoidance coping, as a further evaluation of Wallander and Varni's Disability-Stress-Coping model emphasizing cognitive processes. One hundred sixteen mothers of children, ages 2 to 20, with spina bifida or cerebral palsy completed measures of relevant constructs. Results show that the mother's appraisal of disability-related stress is strongly associated with her reported maladjustment. However, perceptions of competence in problem solving are associated with better overall adjustment. A portion of this relation appears mediated by coping styLe, as confidence in one's problem-solving ability increases so does the likelihood of selecting more adaptive coping strategies when faced with disability-related stress. Overall, consideration of perceived problem-solving ability appears to make a valuable contribution to the Disability-Stress-Coping model and to current understanding of the experience of coping with raising a child with a disability. Perceived problem-solving ability can also be linked to clinical intervention, as discussed.
O’Brien, L. M. (2006, Spring). Being bent over backward: A mother and teacher educator challenges the positioning of her daughter with disabilities. Disability Studies Quarterly, 26
In this paper I draw on my life story as a teacher educator and the mother of a daughter with disabilities to trouble the identity that positions and labels her as, first and foremost in U.S. school settings, a "child with special needs." Drawing on a brief snippet from our profoundly interrelated lives (Hillyer, 1993), I argue that educators must reconsider the positioning of children who differ from the "norm," and stop labeling, and hence limiting, children. I end with recommendations for personal, educational, and societal policies and practices that would be less painful and limiting, and more inclusive, supportive, and ultimately democratic.
O'Hara, J.., & Martin, H. (2003, March). Parents with learning disabilities: A study of gender and cultural perspectives in East London. British Journal of Learning Disabilities, 31
The rights of people with learning disabilities to marry and have a family is at the heart of the Government's new strategy (Valuing People), yet there are few integrated and co-ordinated services to meet their needs. All too often, learning disability is the sole reason why children are removed from their biological parents. Whilst there is a small but growing literature on the quality and extent of the social supports available, little attention has been paid to culture and gender. This study analyses data on parents who came into contact with the specialist community learning disability health team in East London over a 5-year period in respect of culture, gender and outcomes.
O'Toole, C. J. (2002, September 19). Girls with disabilities: A mother's perspective.
Washington, DC: Center for Women Policy Studies. Retrieved March 2, 2005 from http://www.centerwomenpolicy.org/leg.cfm?StatementID=5
This is a text of a legislative statement by Corbett Joan O'Toole, a women with a disability and mother to a daughter with disabilities, "about both the encouraging and the challenging things happening at the elementary school level for girls with disabilities." O'Toole discusses "…4 different aspects of the challenges: how gender equity projects impact girls with disabilities; how special education interfaces with equity efforts; role models for girls with disabilities; and the impact of current educational structures on mothers."
An in-depth article published in Disability World gives a detailed description of the briefing and testimony as well as issues raised. The testimony of two out of the three women with disabilities involved can be found at http://www.disabilityworld.org/09-10_02/women/status.shtml
O'Toole, C. J. (2002, Fall). Sex, disability and motherhood: Access to sexuality for disabled mothers. Disability Studies Quarterly, 22
(4), 81-101. Retrieved March 31, 2005 from http://www.dsq-sds.org/_articles_pdf/2002/Fall/dsq_2002
There is limited research into the sexual lives of mothers, particularly mothers with disabilities. This article examines the barriers to sexuality facing mothers with disabilities. These barriers include: stereotypes that disabled mothers are not sexual, lack of resources for essential aspects of parenting, and difficulty in creating time for personal and private adult activities. Recommendations are presented based on the experiences of disabled mothers.
Oelofsen, N., & Richardson, P. (2006, March). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual & Developmental Disability, 31
(1), 1-12. Background:
Few previous studies have examined Antonovsky's (1979, 1987) sense of coherence (SOC) in parents of young children with developmental disability (DD). This study explored relationships between parental stress, SOC, social support, and health in parents of preschool children with and without DD. A secondary aim was to explore the relevance of the SOC construct to parental adjustment. Method:
Data were analysed from 59 families with preschool children with DD and 45 families of typically developing preschoolers (children without DD) who completed the study questionnaire. Results: Mothers and fathers of children with DD reported high levels of parenting stress, with 84% of mothers' and 67% of fathers' scores falling within the clinical range. Parents of children with DD consistently reported higher levels of parenting stress, weaker SOC, and, for mothers and parents in 2-parent families, poorer health than parents of children without DD. Within families, mothers of children with DD reported poorer health, higher levels of parenting stress, and weaker SOC than their partners. There were no significant differences in reported health, parenting stress, or SOC between parents of children without DD. Conclusions:
The results supported previous findings on high levels of parental stress in parents of preschool children with DD. The weaker SOC of parents of children with DD is likely to be an indication of the pervasive impact on parents of their child's DD. These findings also indicated possible gender differences in parental adjustment to their child's DD. Overall, the findings of this study support the usefulness of SOC theory in understanding adaptation in parents of children with DD.
Orsmond, G. I., Lin, L., & Seltzer, M. M. (2007, August). Mothers of adolescents and adults with autism: Parenting multiple children with disabilities. Intellectual and Developmental Disabilities, 45
We examined types of disabilities in siblings from a large sample of families of adolescents and adults with autism spectrum disorders (ASD) and the impact of another child with a disability on maternal and family well-being. The most frequent disabilities in siblings were attention and hyperactivity (4.6%) and autism spectrum (2.4%) disorders and psychiatric (2.1%) and learning (2.0%) disabilities. Mothers parenting another child with a disability (in addition to the child with ASD) had higher levels of depressive symptoms and anxiety and lower family adaptability and cohesion compared with mothers whose only child with a disability had ASD (matched on child age and family size). Findings are discussed with respect to understanding the needs of such families, including service provision.
Orsmond, G., & Seltzer, M. M. (2000). Brothers and sisters of adults with mental retardation: Gendered nature of the sibling relationship. American Journal on Mental Retardation, 105
Differences and similarities between brothers and sisters of adults with mental retardation with respect to the instrumental (caregiving, companionship) and affective (positive affect, emotion) aspects of the sibling relationship were examined. Sisters scored higher than brothers in the caregiving, companionship, and positive affect aspects of the sibling relationship. Brothers' sibling relationships were conditioned by the gender of the sibling with mental retardation. Brothers of brothers with mental retardation had a more favorable emotional response than did brothers of sisters. Two-wave longitudinal data showed that sibling involvement and closeness increased over time, but was dependent upon changes in the health of the mother. The findings are discussed in relation to normative patterns in the sibling relationship across the life course.
Orsmond, G., Seltzer, M. M., Krauss, M. W., & Hong, J. (2003, July). Behavior problems in adults with mental retardation and maternal well-being: Examination of the direction of effects. American Journal on Mental Retardation, 108
We examined the occurrence and stability of behavior problems over a 6-year period among 193 adults with mental retardation who lived with their mothers. At the beginning of the study period, almost 30% of the sample had clinically significant behavior problems and about 25% had no behavior problems. During the study period, group-level stability of behavior problems and individual-level change were observed. We tested the bidirectional relations between behavior problems and maternal well-being and found evidence of both directions of influence. Initial levels and changes over time in behavior problems predicted changes in maternal well-being, and initial levels and changes over time in maternal well-being predicted changes in behavior problems in the son or daughter.
Our Bodies, Ourselves. (2003, May). Prenatal testing and disability rights
[Online]. Retrieved March 15, 2005 from http://www.ourbodiesourselves.org/book/companion.asp?id=31&compID=43
Web-based companion content on prenatal testing and disability rights for Chapter 31 of Our Bodies, Ourselves
, “The Politics of Women’s Health.” Also includes a reprint of an article by Deborah Kaplan and Marsha Saxton
Pakenham, K. I., Samios, C., & Sofronoff, K. (2005, May). Adjustment in mothers of children with Asperger syndrome: An application of the double ABCX model of family adjustment . Autism, 9
The present study examined the applicability of the double ABCX model of family adjustment in explaining maternal adjustment to caring for a child diagnosed with Asperger syndrome. Forty-seven mothers completed questionnaires at a university clinic while their children were participating in an anxiety intervention. The children were aged between 10 and 12 years. Results of correlations showed that each of the model components was related to one or more domains of maternal adjustment in the direction predicted, with the exception of problem-focused coping. Hierarchical regression analyses demonstrated that, after controlling for the effects of relevant demographics, stressor severity, pile-up of demands and coping were related to adjustment. Findings indicate the utility of the double ABCX model in guiding research into parental adjustment when caring for a child with Asperger syndrome. Limitations of the study and clinical implications are discussed.
Panitch, M. (2008). Disability, mothers, and organization: Accidental activists.
New York: Routledge
This book examines how and why mothers with disabled children became activists. Leading campaigns to close institutions and secure human rights, these women learned to mother as activists, struggling in their homes and communities against the debilitating and demoralizing effects of exclusion. Activist mothers recognized the importance of becoming advocates for change beyond their own families and contributed to building an organization to place their issues on a more public scale. In highlighting this under-examined movement, this book contributes to the scholarship on Disability Studies, Women's Students, Sociology, and Social Movement Studies.
Parish, S. L. (2006, December). Juggling and struggling: A preliminary work–life study of mothers with adolescents who have developmental disabilities. Mental Retardation, 44
A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child reached adolescence. Service cuts were related to the fact that adolescents are expected to be able to care for themselves, despite the fact that for many adolescents with disabilities, this is not possible. The mothers also reported that the preponderance of the responsibility for arranging care for their children was theirs and was not shouldered by their partners. Policy implications are discussed.
Patterson, A. & Satz, M. (2002). Genetic counseling and the disabled: Feminism examines the stance of those who stand at the gate. In E. Kittay, S. Silvers, & S. Wendell (Eds.), Special issue: Feminism and disability II. Hypatia, 17
This essay examines the possible systematic bias against the disabled in the structure and practice of genetic counseling. Finding that the profession's "nondirective" imperative remains problematic, the authors recommend that methodology developed by feminist standpoint epistemology be used to incorporate the perspective of disabled individuals in genetic counselors' education and practice, thereby reforming society's view of the disabled and preventing possible negative effects of genetic counseling on the self-concept and material circumstance of disabled individuals.
Payne, D., & McPherson , K. M. (2010). Becoming mothers: Multiple sclerosis and motherhood: A qualitative study. Disability & Rehabilitation, 32
(8), 629-638. Purpose.
This study aimed to provide a better understanding of the experiences of women with multiple sclerosis (MS) in becoming or being a mother. The research also focused on eliciting their perspectives of strategies that helped them and their families manage mothering young children whilst living with MS. Method.
A qualitative, interpretive, descriptive approach using individual interviews to elicit and analyze women's experiences of MS and pregnancy, birth, and mothering young children. Results.
Analysis of interviews with nine women produced six key themes: becoming a mother as a public private experience, keeping the baby safe; support; conserving energy; being the ideal mother; and backgrounding of their MS. Having MS required the women to set in place specific strategies for managing pregnancy and motherhood associated with a number of these issues such as gathering information and identifying sources of physical and social support. Conclusion.
This study highlights how pregnancy and motherhood are valued, but challenging times, for women with MS. Recommendations about how services might respond to the specific challenges for women with MS considering or becoming mothers are proposed.
Pennington, L., & Mcconachie, H. (1999). Mother-child interaction revisited: Communication with non-speaking physically disabled children. International Journal of Language & Communication Disorders, 34
This paper presents an in-depth analysis of the interaction between mothers and their severely physically disabled children who have motor speech disorders. The study was designed to partially replicate previous investigations, most notably those undertaken by Light et al ., to examine if the patterns of conversation previously described were observed in interaction involving children of a wide age range. Twenty children who had four-limb cerebral palsy, with no diagnosed learning difficulties or sensory impairments, and who were between 2 and 10 years of age inclusive participated in the research with their mothers. Children's speech was unintelligible to their parents out of context and most had been provided with aided communication systems. Other carers were excluded from the research due to possible differences in interaction style. Conversation between mothers and children was videotaped in a standard play situation. The toys used to stimulate interaction had been shown to elicit the full range of communication skills targeted in the present study from nondisabled children. Videotaped interaction was coded to show the structure of conversation and the functions used. The mode of communication used by the children was also recorded. In addition, communicative functions were elicited from the children in a semi-scripted conversation with a clinician developed from that used by Light et al . Structural moves and communicative functions used by mothers and children were examined using mean proportions. Sequential analysis of mother-child interaction was also undertaken at both levels to investigate the patterns that recurred in conversation. Results support those obtained in previous studies, showing restricted conversation patterns and high levels of maternal directiveness. Mothers initiated most communicative exchanges, asking many questions and issuing many requests for attention, objects or activities. Children across the age range produced more response moves than any other move type. Their responses contained yes/no answers and acknowledgements, and to a lesser extent provisions of information. When children did produce communicative functions other than simple confirmation, denials and acknowledgements, they were often not fully understood and were followed by requests for clarification by the mothers. Children produced a wider range of communicative functions in the semi-scripted elicitation conversation with the clinician than in conversation with their mothers ( z =3.52, p =0.0002). The results obtained support those of previous research and suggest that interaction for children with severe motor and speech impairments becomes 'fossilized', changing little throughout childhood. Findings support the two pronged approach to intervention for children using augmentative communication systems that is now developing. Intervention should focus not only on the children, teaching them how to use their augmentative systems and to produce a full range of conversation skills, but also should focus on their carers. Training for carers aims to increase their interaction skills, teaching them how to facilitate and expand children's communication skills.
Place, F. (2008, July). Amniocentesis and motherhood: How prenatal testing shapes our cultural understandings of pregnancy and disability. In L. Ferrier & V. Muller (Eds.), ‘able’ [Feature issue], M/C Journal, 11
(3), Retrieved July 25, 2008 from http://journal.media-culture.org.au/index.php/mcjournal/
“There are days when having a child with Down syndrome can mean losing all hope of being an ordinary mother: a mother with run of the mill concerns, a mother with run of the mill routines. I know. I’ve had such days. I’ve also found that sharing these feelings with other mothers, even those who have a child with a disability, isn’t always easy. Or straightforward. In part I believe my difficulty sharing my experience with other mothers is because the motherhood issues surrounding the birth of a child with Down syndrome are qualitatively different to those experienced by mothers who give birth to children with other disabilities. Disabilities such as autism or cerebral palsy. The mother who has a child with autism or cerebral palsy is usually viewed as a victim - as having had no choice – of life having dealt her a cruel blow. There are after all no prenatal tests that can currently pick up these defects. That she may not see herself as a victim or her child as a victim often goes unreported, instead in the eyes of the popular media to give birth to a child with a disability is seen as a personal tragedy – a story of suffering and endurance. In other words disability is to be avoided if at all possible and women are expected to take advantage of the advances in reproductive medicine – to choose a genetically correct pregnancy – thus improving their lives and the lives of their offspring.” (paragraph 1)
Power, R., McManus, V., & Fourie, R. (2009). Hardship, dedication and investment: An exploration of Irish mothers commitment to communicating with their children with cerebral palsy. Journal of Psychiatric and Mental Health Nursing, 16
This qualitative study investigated the experiences of mothers who have a child with communication difficulties resulting from cerebral palsy (CP). There is a dearth of information about parents' experiences of having a child with CP and communication difficulties. Three participants, whose children had moderate or severe CP and communication difficulties, were recruited from a voluntary organization. Participants were interviewed using an in-depth, semi-structured interview guide. Interviews were audio-recorded, then transcribed and subsequently analysed using Grounded Theory methods. Five main themes emerged, combining to form the core category of mothers dedicating their attention to their children. The information gleaned from this study could have important implications for nurses involved in facilitating communication, including speech and language therapists, occupational therapists and registered nurses. By becoming more aware of the experiences of parents with a child with CP and communication disorders, nurses may be better able to plan and implement therapy and also support communication aims. The study concludes with a discussion of further research avenues, suggesting that a study investigating the experiences of parents of children with other types of physical disabilities affecting communication should be conducted to determine the similarities and differences of parents of children with other kinds of disability. A similar study with a larger sample could be conducted to validate the findings of the current study.
Press, N., & Browner, C. H. (1997, October). Why women say yes to prenatal diagnosis. Social Science & Medicine, 45
Despite considerable concern of bioethicists, disabilities rights activists, feminists and others about the spread of prenatal diagnostic technologies, their routine acceptance in many parts of the world continues at a rapid pace. Yet, there is wide variation by country and region in rates of acceptance of prenatal diagnosis. We draw on John McKinlay's model of how a medical innovation becomes routinized to explore the circumstances that led to the widespread use of one prenatal diagnostic screen—the maternal serum alpha fetoprotein (MSAFP) test for the detection of neural tube defects and other developmental disabilities. As predicted by McKinlay's model, analysis of published data suggests that strong institutional or provider support is the best predictor of women's level of MSAFP test acceptance. Data collected at a health maintenance organization in California illuminate the processes through which medico-legal and institutional forces affect the use of MSAFP screening. By examining the language women use to talk about MSAFP screening, we show how providers also shape women's understandings of the meaning and purpose of MSAFP screening. These data ultimately shed light on how the very ethical issues which concern critics of prenatal diagnosis become obscured in the processes by which this screening test becomes accepted as routine.
Prilleltensky, O. (2004). Motherhood and disability: Children and choices.
New York: Palgrave Macmillan.
This book explores the intersection between motherhood and physical disability. It is based on a study that focused on the lived experiences of women with physical disabilities, mothers and non-mothers. What meaning does motherhood have for these women? What is it like for them? What messages do they receive about themselves as women, with or without children? What barriers do they foresee and/or come across? These issues are explored from the vantage point of disabled women with and without children. A detailed Table of Contents, the Introduction and the Index are available at: http://www.palgrave.com/pdfs/1403904952.pdf
Prilleltensky, O. (2004, May). My child is not my carer: Mothers with physical disabilities and the well-being of children. Disability & Society, 19
This article describes a qualitative study on the experiences of mothers with physical disabilities. Two focus groups were held for mothers with young children and mothers of older children. Eight mothers also participated in in-depth interviews. All have a physical impairment, most are wheelchair users. This article focuses on (a) participants' attempts to ensure the physical and psychological well-being of their children; (b) their child-rearing philosophies and practices; and (c) the overall nature of the parent-child relationship. A range of parenting practices, experiences and relationships was reported. The variability of experiences notwithstanding, participants' life stories demonstrate a strong commitment to children, actions to ensure their care and well-being, and attempts to shield them from any burden related to the maternal disability. Whilst challenges and barriers were candidly reported, by and large, they do not overshadow the joy and fulfillment that these women derive from motherhood.
Pruchno, R. A. (2003, December). Enmeshed lives: Adult children with developmental disabilities and their aging mothers. Psychology and Aging, 18
This article uses equity theory to examine the ways in which aging mothers and their adult children with developmental disabilities support each other and the effects that this exchange has on the caregiving satisfaction and burden of the mothers. Data from 305 mothers revealed that exchange flows both from mother to child and from child to mother. Results indicate that caregiving satisfaction increased when affection from child to mother was greater. Caregiving burden was not affected by either functional support or affection from child to mother.
Pruchno, R., Patrick, J. H., & Burant, C. J. (1997, October). African American and White mothers of adults with chronic disabilities: Caregiving burden and satisfaction. Family Relations, 46
A model is developed and tested that explains the effects of race on the caregiving experience by patterning relationships between race and several causal agents.
Rapp, R. (2001, December). Gender, body, biomedicine: How some
feminist concerns dragged reproduction to the center of social theory. Medical Anthropology Quarterly, 15
This article tracks the growth of medical anthropology in the United States in the decades since the 1970s, as it has intersected the expansion of feminist activism and scholarship. I argue that feminist attention to embodied inequalities quickly focused on reproduction as a site of investigation and intervention. Medical anthropology has benefited from feminist concern with stratified reproduction, especially its interrogation of nonnormative and stigmatized fertility and childbearing. When reproduction becomes problematic, it provides a lens through which cultural norms, struggles, and transformations can be viewed. Examples drawn from prenatal diagnosis are particularly revelatory of the diverse interests and stakes we all hold in reproduction.
Raz, A. (2004, November). "Important to test, important to support": Attitudes toward disability rights and prenatal diagnosis among leaders of support groups for genetic disorders in Israel. Social Science and Medicine, 59
To situate the North American, and to some extent, European debate regarding disability rights and prenatal diagnosis in a social and cross-cultural context, this pilot study explored the views of leaders of organizations for disability rights and support groups for people with genetic conditions in Israel, where a similar debate has not emerged. Unlike many of their counterparts in North America, Israeli respondents were generally in favor of prenatal genetic testing as well as selective abortion, while at the same time expressing their commitment for already-born disabled individuals. The religious, legal, economic and socio-cultural context of this two-fold view of disability--which separates prenatal (preventive testing) and postnatal (supporting disability)--is discussed in order to further situate the debate in cross-cultural perspective. It is hypothesized that prenatal diagnosis and selective abortion are supported in secular Israeli society independently of the rabbinical stance, which forbids selective abortion, and in a way that reflects society's non-acceptance of congenital disability, veneration of the healthy body, and medical directiveness.
Raz, A. E. (2005, June). Disability rights, prenatal diagnosis and eugenics: A cross-cultural view. Journal of Genetic Counseling, 14
This paper considers the disability rights critique of genetic testing in the context of different communities and the issue of nondirectiveness. Despite the wide usage of genetic diagnosis in Israel, no public debate has emerged there concerning disability rights and prenatal testing. The common attitude that emerged from interviews with Israeli representatives of organizations “of’’ and “for’’ people with genetic diseases and congenital disabilities can be described as a two-fold view of disability: support of genetic testing during pregnancy, and support of the disabled person after birth. This two-fold view is explained as a secular construction situated in legal, economic and cultural contexts. The paper concludes by considering the implications of the “two-fold view’’ of disability for the profession of genetic counseling. It is argued that awareness of the existence of conflicting views among clients—such as the view of the ‘disability critique’ as well as of the “two-fold view of disability’’—should strengthen the significance of nondirectiveness.
Read, J. (2000). Disability, the family and society: Listening to mothers
[Disability, Human Rights, and Society]. Buckingham, UK: Open University Press.
Circumstances dictate that many mothers play a central role in the upbringing of their disabled children. Mothers and children often find themselves involved in an unusually intimate and protracted relationship. This book explores mothers' perspectives about the ways that they find themselves acting as mediators between their children and a world that can be hostile to their interests. It takes as its starting point a study in which mothers from diverse backgrounds detail the ways in which they attempt to represent their children to the world, and the world to their children in both formal and informal interactions. They describe challenging discussions with children and other family members as well as battles and negotiations elsewhere. Their particular experiences and perspectives are linked to wider research and theory on motherhood and caring, the life patterns of disabled children and their families, and the discrimination faced by disabled children and adults. Disability, the Family and Society
will be of interest to students of disability studies, sociology, women's studies, social policy and social and community work.
Read, J. (1991). There was never really any choice: The experience of mothers of disabled children in the United Kingdom. Women’s Studies International Forum,
This article focuses on two main themes. First, it examines the impact that caring for severly disabled children has on the lives of their mothers: the exacting work they undertake, the restrictions they encounter and the choices they have to make. Second, it suggests that those very services which it is assumed will be helpful and relief-giving, are not only fragmented and thin on the ground, but are also often experienced as a mixed blessing, adding to the work load and inducing further stress in a number of ways. Some of the parents whose opinions have contributed to this article, are those who took part in a small-scale research project on the relationships between parents of disabled children and professionals. Others include those who participated, often in the role of teachers, in a series of open studies courses for service providers and consumers at Warwick University between 1980 and 1985.
Reist, M. T. (2006). Defiant birth: Women who resist medical eugenics.
Victoria, Australia: Spinifex Press.
Imagine: you’re pregnant, excited and looking forward to the birth of a much-wanted child. The doctor suggests you have an abortion…
Today’s society demands physical perfection from all and regards medical and scientific technologies as saviours to be embraced whatever the cost. To have a child who has been diagnosed as disabled is deemed not just unnecessary, but careless and even immoral. Defiant Birth
tells the courageous stories of women who continued their pregnancies despite intense pressure from doctors, family members and social expectations. These women were told they shouldn’t have their babies because of a perceived imperfection in the child, or because their own disabilities do not fit within the parameters of what a mother should be. In the face of silent disapproval and even open hostility, they have confronted the stigma of disability and had their children anyway.
Some of the writers tell of grave misdiagnosis, others of life-changing experiences, discovering the joy and love in children considered unworthy of life.
Melinda Tankard Reist dares to expose how eugenics is practised today, and how it is condoned, even expected, by mainstream society. More than ever before, doctors are diagnosing babies in the womb as less than perfect. But what if the only ‘cure’ they offer will end the child’s life.
Reflections on the sterilisation of young women with intellectual disability: A conversation between Susan Brady and David Turnbull for QAI.
(n.d.). Brisbane, Queensland: Queensland Advocacy Incorporated (QAI). Retrieved March 15, 2005 from http://www.qai.org.au/documents/doc_26.doc
This is a transcript of an interview with Susan Brady who has spent 20 years working with young women, their families and the courts and guardianship tribunals around issues of sterilisation and other “special medical procedures” in Queensland, Australia.
Revicki, D. A., Siddique, J., Frank, L., Chung, J. Y., Green, B. L., Krupnick, J., Prasad, M., & Miranda, J. (2005). Cost-effectiveness of evidence-based pharmacotherapy or cognitive behavior therapy compared with community referral for major depression in predominantly low-income minority women. Archives of General Psychiatry, 62
(8), 868-875. Background:
Few clinical trials have evaluated interventions for major depressive disorder in samples of low-income minority women, and little is known about the cost-effectiveness of depression interventions for this population. Objective:
To evaluate the cost-effectiveness of pharmacotherapy or cognitive behavior therapy (CBT) compared with community referral for major depression in low-income minority women. Design, Setting, and Participants:
A randomized clinical trial was conducted in 267 women with current major depression. Interventions:
Participants were randomly assigned to pharmacotherapy (paroxetine hydrochloride or bupropion hydrochloride) (n = 88), CBT (n = 90), or community referral (n = 89). Main Outcome Measures:
The main outcomes were intervention and health care costs, depression-free days, and quality-adjusted life years based on Hamilton Depression Rating Scale scores and Medical Outcomes Study 36-Item Short-Form Health Survey summary scores for 12 months. Cost-effectiveness ratios were estimated to compare incremental patient outcomes with incremental costs for pharmacotherapy relative to community referral and for CBT relative to community referral. Results:
Compared with the community referral group, the pharmacotherapy group had significantly lower adjusted mean Hamilton Depression Rating Scale scores from the 3rd month through the 10th month (P = .04 to P<.001) of the study, and the CBT group had significantly lower adjusted mean scores from the 5th month through the 10th month (P = .03 to P = .049). There were significantly more depression-free days in the pharmacotherapy group (mean, 39.7; 95% confidence interval, 12.9-66.5) and the CBT group (mean, 25.80; 95% confidence interval, 0.04-51.50) than in the community referral group. The cost per additional depression-free day was $24.65 for pharmacotherapy and $27.04 for CBT compared with community referral. Conclusions:
Effective treatment for depression in low-income minority women reduces depressive symptoms but increases costs compared with community referral. The pharmacotherapy and CBT interventions were cost-effective relative to community referral for the health care system.
Reyes-Blanes, M. E. (2001). Puerto Rican mothers of young children with disabilities: A comparison of perceived support systems. The International Journal of Sociology and Social Policy, 21
This study compared family sources of support perceived by 55 Puerto Rican mothers of young children with disabilities residing in Puerto Rico and 39 of their counterparts living in Florida. The Family support scale (FSS) was used in the interview process to measure respectively mothers' perception of sources of support. Multiple regression analyses indicated mothers from the PR sample perceived significantly more sources of support than mothers in the Florida sample. Mothers' perceived patterns and sources of support are described. Implications for schools, agencies, and service providers working with Puerto Rican families of young children with disabilities are discussed.
Rich-Edwards, J. W., Kleinman, K., Abrams, A., Harlow, B. L., McLaughlin, T. J., Joffe, H., & Gillman, M. W. (2006). Sociodemographic predictors of antenatal and postpartum depressive symptoms among women in a medical group practice. Journal of Epidemiology and Community Health, 60
(3), 221-227. Objective:
Data are scarce regarding the sociodemographic predictors of antenatal and postpartum depression. This study investigated whether race/ethnicity, age, finances, and partnership status were associated with antenatal and postpartum depressive symptoms. Setting:
1662 participants in Project Viva, a US cohort study. Design:
Mothers indicated mid-pregnancy and six month postpartum depressive symptoms on the Edinburgh postpartum depression scale (EPDS). Associations of sociodemographic factors with odds of scoring >12 on the EPDS were estimated. Main results:
The prevalence of depressive symptoms was 9% at mid-pregnancy and 8% postpartum. Black and Hispanic mothers had a higher prevalence of depressive symptoms compared with non-Hispanic white mothers. These associations were explained by lower income, financial hardship, and higher incidence of poor pregnancy outcome among minority women. Young maternal age was associated with greater risk of antenatal and postpartum depressive symptoms, largely attributable to the prevalence of financial hardship, unwanted pregnancy, and lack of a partner. The strongest risk factor for antenatal depressive symptoms was a history of depression (OR = 4.07; 95% CI 3.76, 4.40), and the strongest risk for postpartum depressive symptoms was depressive symptoms during pregnancy (6.78; 4.07, 11.31) or a history of depression before pregnancy (3.82; 2.31, 6.31). Conclusions:
Financial hardship and unwanted pregnancy are associated with antenatal and postpartum depressive symptoms. Women with a history of depression and those with poor pregnancy outcomes are especially vulnerable to depressive symptoms during the childbearing year. Once these factors are taken in account, minority mothers have the same risk of antenatal and postpartum depressive symptoms as white mothers.
Roberts, C. D., Stough, L. M., & Parrish, L. H. (2002, Spring). The role of genetic counseling in the elective termination of pregnancies involving fetuses with disabilities. Journal of Special Education, 36
A survey of 69 women at risk for carrying a fetus with a disability found most would choose to terminate a pregnancy that tested positive for a disability regardless of type of disability (either Down syndrome or spina bifida). The decision was not related to knowledge about disabilities but was negatively related to knowledge of disability-related services.
Roeher Institute. (2002, January). The construction of disability and risk in genetic counselling discourse.
North York, ON: L’Institut Roeher Institute. Retrieved March 8, 2005 from http://www.yorku.ca/nnewh/english/pubs/Construction%20of%20Disability%20pdf.pdf
This research initiative set out to assess the ways that the conceptions of disability and risk that circulate in prenatal genetic counseling discourse, law, and public policy affect women’s well-being, their decision-making process during pregnancy, and public awareness about people with disabilities. The final goal of this research project is the development of a set of guidelines for genetic counseling that would contribute to a valuation of people with disabilities.
Rogers, C. (2010, January). But it's not all about the sex: Mothering, normalisation and young learning disabled people. Disability & Society, 25
This paper is about mothering, young learning disabled people, their sexualised and relationship lives and normalisation - not through the lens of the disabled person, but via a mothers perspective and theoretical discussion. As a mother who has a learning disabled daughter, a feminist and an academic my own mothering experience, my Ph.D. research and social theory are woven throughout this paper with the intention of opening up debate about sex, intimacy and normalisation, and how these impact upon young learning disabled people. I suggest that the relationship between sex, reproduction, intimacy and intellectual impairment and a project to decipher what it means to be human in all its dirty glory are also part of the discourse that needs to be discussed experientially and theoretically. So much so that the messy world within which we all live can be variously and differently constructed.
Rogers, J. G. (1993). A guide to pregnancy, labor, and delivery for women with disabilities. In F. P. Haseltine, S. S. Cole, & D. B. Gray, Reproductive issues for persons with physical disabilities
(pp. 83-95). Baltimore: Paul H. Brookes Publishing Co, Inc.
This chapter was adapted from an earlier edition of The Mother to Be: A Guide to Pregnancy and Birth for Women with Disabilities
. It discusses a few of the problems that affect numerous pregnant women who have disabilities. The information is based on interviews with 36 women with a variety of disabilities. Among the findings is that the severity of disability, not necessarily the type of disability can predict how difficult a pregnancy will be. After a brief discussion about negative attitudes many disabled women face when they are pregnant, the author describes and discusses pregnancy discomforts which many women with disabilities experience. She also discusses how to accommodate women in terms of office procedures, and she also provides a lengthy discussion of the experiences of labor reported by the women interviewed for this study. Following labor, Rogers gives information regarding delivery, cesarean section, postpartum recovery, and childcare issues.
Rogers, J. G. (1993). Perinatal education for women with physical disabilities. AWHONN’s Clinical Issues in Perinatal & Women’s Health Nursing, 4
Pregnant women with disabilities have many of the same concerns as able-bodied pregnant women. However, pregnant women with disabilities have special perinatal education needs. Information on the problems encountered and approaches that can be used is presented based on current research and interviews with 36 childbearing women with disabilities.
Rogers, J. (2005, June). The disabled woman's guide to pregnancy and birth.
New York: Demos Medical Publishing.
This comprehensive and useful guide that is based on the experiences of ninety women with disabilities who chose to have children. In order to bring an intimate focus and understanding to the issues involved in being pregnant and disabled, author Judith Rogers conducted in-depth interviews with ninety women with 22 different types of disabilities. Among the ninety women interviewed, there were 143 pregnancies. Thoroughly researched and informative, this book is a practical guide both for disabled women planning for pregnancy and the health professionals who work with them. The Disabled Woman's Guide to Pregnancy and Birth
supports the right of all women to choose motherhood, and will be useful for any disabled woman who desires to have a child. The subjects covered include: an introduction to the ninety women and their specific disabilities; the decision to have a baby; parenting with a disability; emotional concerns of the mother, family and friends; nutrition and exercise in pregnancy; the three trimesters; labor and delivery; caesarean delivery; the postpartum period; and breast-feeding. A list of references and a glossary will assist the reader in obtaining additional information and understanding medical terminology.
Empathetic, balanced, comprehensive, and practical, this guide provides all the facts needed by disabled women and their families. It stresses the importance of informed communication among the pregnant woman, her family members, and health care professionals. It is the only book that answers critical questions and provides guidance for the woman with a disability facing one of the biggest challenges of her life.
Rogers, J., & Matsumura, M. (1992). Mother-to-be: A guide to pregnancy and birth for women with disabilities.
New York: Demos Medical Publishing.
A very good resource for disabled women who are expecting or considering pregnancy. Included are the results of a survey taken by thirty-six disabled women who outline the difficulties and issues which arose with pregnancy as a result of their individual disabilities. Disabilities covered in this book include arthritis, ataxia, cerebral palsy, lupus, multiple sclerosis, post-polio syndrome and spina bifida. Among other resources is a suggested reading list.
Roskam, I., & Schelstraete, M. (2007, March-April). A qualitative analysis of mothers’ childrearing behaviour towards their disabled child. Research in Developmental Disabilities, 28
The present study provides a qualitative analysis of mothers’ childrearing behaviour focused on the coercive-inductive dimension, in particular in an effort to show that coerciveness is not always negative, but may be adaptive to the child's characteristics. Thirty-one mothers provided self-reports from a structured interview on their childrearing behaviour to the child in diverse situations. Data analyses examined the associations between the ratings of the mother's reports on the coercive-inductive dimension and three measures: the child's disability (mental, sensory and multiple), the child's personality traits and the child's observable behaviour. Results demonstrated that the mothers’ childrearing behaviours were adapted to their child's characteristics, in particular by combining degrees of coercive and inductive strategies according to situations. They contribute to qualify in a more articulated way the mothers’ childrearing behaviour than through more simple quantitative measures. The discussion finally underlies the interest in analyzing mothers’ reports for research on parent–child interaction and for clinical issue.
Rothman, B. K. (1986). The tentative pregnancy: Prenatal diagnoses and the future of motherhood.
New York: Viking/Penguin.
The new technology that makes prenatal screening and diagnosis possible is usually celebrated by the medical establishment as a triumph for modern medicine as means to prevent disability. This technology is also seen as a way to improve the lives of families and societies. This book deals with this new technology but goes beyond the technology itself and looks at how it affects the lives of women who use it. This is a study of 120 women who have used amniocentesis, the most used form of prenatal testing. All the women in this study who received "bad diagnoses" (that is the fetus was diagnosed as having some form of a disability) made the decision to have an abortion. Rothman describes with great sympathy the pressure on women to use the technology and to undergo abortion if the fetus is "defective." Rothman sees these women as victims of technology, sacrificing themselves to spare their children from suffering.
The subject of this book is at the center of one of the dilemmas faced by feminists with disabilities, that is, feminists with disabilities who have participated in the fight for women's rights to control their own bodies, who are now faced with the fact that this right is used to selectively abort "defective" fetuses.
Rueda, R., Monzo, L., Shapiro, J., Gomez, J., & Blacher, J. (2005, Summer). Cultural models of transition: Latina mothers of young adults with developmental disabilities. Exceptional Children, 71
This study used several focus groups to examine culturally based variation in attitudes, beliefs, and meanings of transition. Sixteen Latina mothers of young adults with disabilities participated in the study, recruited from an agency serving low-income, predominantly Spanish-speaking communities. Data analysis identified five primary themes: (a) basic life skills and social adaptation, (b) the importance of the family and home rather than individualism and independence, (c) the importance of the mother's role and expertise in decision making, (d) access to information; and (e) dangers of the outside world. The overarching theme was a view of transition as home-centered, sheltered adaptation as opposed to a model emphasizing independent productivity. The findings and the implications for future research and practice are discussed.
Ryan, S., & Runswick-Cole, K. (2008, May). Repositioning mothers: Mothers, disabled children and disability studies. Disability & Society, 23
In this article we set out to review the ways in which mothers of disabled children have been portrayed within disability studies and the more broader academic literature. We argue that within disability studies mothers of disabled children occupy a liminal position because they are often not disabled and yet they can experience forms of disablism. Their experiences can differ markedly from the experiences of mothers of non-disabled children and yet the consequences and outcomes of these experiences, such as developing a 'special competence' is largely overlooked. Mothers can work to effect change on behalf of their children and, in some cases, for disabled people more generally, however, this role of activist mother is largely undervalued. The review of literature presented here leads us to conclude that further research needs to be undertaken exploring and highlighting the ways in which mothers of disabled children negotiate, manage and approach their daily lives, operating within what are described by feminist scholars as oppressive mothering ideologies and disabling environments.
Santos, R. M., & McCollum, J. A. (2007). Perspectives of parent-child interaction in Filipino mothers of very young children with and without disabilities. Journal of Early Intervention, 29
This study was designed to expand understandings about Filipino mothers’ daily interactions with their infants and toddlers with and without disabilities. Qualitative procedures were used to analyze transcripts from structured, open-ended interviews with mothers of 10- to 26-month-old children. Three themes were used to characterize and compare mothers of children with and without disabilities. Similarities and differences emerged with respect to maternal roles during parent-child interaction, contexts of interaction, and sources of influence on interaction. Across themes, a cohesive cluster of responses also characterized descriptions of interactions among a subgroup of mothers whose children had the most significant, readily identifiable, disabilities.
Savulescu, J. (2002, October). Deaf lesbians, ‘designer disability,’ and the future of medicine. British Medical Journal, 324
A deaf lesbian couple in the United States have deliberately created a deaf child. Sharon Duchesneau and Candy McCullough used their own sperm donor, a deaf friend with five generations of deafness in his family. Like others in the deaf community, Duchesneau and McCullough don't see deafness as a disability. They see being deaf as defining their cultural identity and see signing as a sophisticated, unique form of communication.
Sayce, L., & Perkins, R. (2002, November/December). ‘They should not breed’: Feminism, disability and reproductive rights. Special feature: Women and disability [Part I]. off our backs, 32
Written by two British women, this article reflects on their personal journeys to “bring together feminism and disability politics” (p. 18) and a review of eugenics and reproductive rights.
Schaffer, R., Kuczynski, K., & Skinner, D. (2008, January). Producing genetic knowledge and citizenship through the Internet: Mothers, pediatric genetics, and cybermedicine. Sociology of Health & Illness, 30
This article analyses data from a longitudinal, ethnographic study conducted in the United States to examine how 100 mothers of children with genetic disorders used the Internet to interpret, produce, and circulate genetic knowledge pertaining to their child's condition. We describe how they came to value their own experiential knowledge, helped shift the boundaries of what counts as authoritative knowledge, and assumed the role of genetic citizen, fighting for specific rights while shouldering and contesting concomitant duties and obligations. This exploration of e-health use contributes to our understanding of the social practices and power relations that cut across online and off-line worlds to co-produce genetic knowledge and genetic citizenship in multiple contexts.
Schneider, B. (2005, June). Mothers talk about their children with schizophrenia: A performance autoethnography. Journal of Psychiatric & Mental Health Nursing, 12
This article presents the script for a performance autoethnography that explores how mothers of adults with schizophrenia talk about their children. The script draws on my own experience as a mother of a person with schizophrenia, interviews I conducted with mothers of people with schizophrenia, and written accounts by mothers of people with schizophrenia. Autoethnography refers to an approach to social science research in which the experience of the researcher is recognized as a salient part of the research process. Autoethnography typically uses non-traditional genres, such as this script, for presenting research to address ethical and political problems in the representation of research. These genres allow researchers to both break with and continue the ethnographic tradition of representing the lives and experiences of others.
Schumacher, W. (1989). This child is mine
[Video]. Berkeley, CA: Center for Media and Independent Learning, UC Berkeley.
This is the first documentary to explore the ethical and social dilemmas surrounding the issue of parenting by women with developmental disabilities. It focuses on four such women, showing that many mildly handicapped women are perfectly capable of being good mothers if some specialized support services are available. The video is designed to dispel the myth that mental retardation automatically equates with parental inadequacy.
Scott, R. (2005, Winter). Prenatal testing, reproductive autonomy, and disability interests. In Special section: Open forum. Cambridge Quarterly of Healthcare Ethics, 14
Contribution to an annual open forum issue reflecting on the overall purpose and goal of bioethics. Explores the relationship between reproductive autonomy, prenatal screening and associated practices, and the interests of people with disabilities. Focuses on three main points: the view that testing and selection practices are misleadingly dominated by a medical model of disability and that this has discriminatory implications; the view that such practices will result in a loss of support to people with disabilities; and the view that such practices , particularly through their increasingly routine nature, express the view that such people should not be (or have been) born.
Severance Eisenhower, A., Baker, B. L., & Blacher, J. (2009). Children’s delayed development and behavior problems: Impact on mothers’ perceived physical health across early childhood. Social Science & Medicine, 68
Mothers of children with developmental delays may experience poorer psychological wellbeing than other mothers; however, little research has examined how delayed development in children might predict mothers’ perceived physical well-being. Children with delayed development manifest heightened behavior problems, which may negatively affect maternal well-being. We examined the associations between developmental delay and behavior problems at child age 3 and mothers’ self-perceived physical health at child ages 3, 4, and 5, in families of 218 children with and without developmental delays. The study sample comprised 218 families from central Pennsylvania and Southern California, USA who were recruited through community agencies that provide diagnostic and intervention services for individuals with development difficulties. We found that mothers of children with delayed development at age 3 reported poorer concurrent and later physical health than mothers of children with typical development. Broadening the analyses to include not only child development status (delayed development versus typical development) but also child behavior problems at age 3, only child behavior problems and the interaction of development status and behavior problems, but not development status itself, predicted maternal health. Early child behavior problems contributed to later maternal health above and beyond early maternal health, suggesting a possible causal association between child behavior problems and mothers’ physical health. The relation between child behavior problems and maternal health was moderated by mothers’ parenting stress and mediated by depressive symptoms. Mothers of children with both delayed development and high behavior problems are a particular risk group that may be especially in need of early intervention. Further research should examine the behavioral and biological pathways by which these child-related stressors influence mothers’ physical health.
Shapiro, J., Monzó, L. D., Rueda, R., Gomez, J. A., & Blacher, J. (2004, February). Alienated advocacy: Perspectives of Latina mothers of young adults with developmental disabilities on service systems. Mental Retardation, 42
Although collaborative partnership between parents and professionals is a cornerstone of the special education and service systems, this relationship exists more as an ideal, especially when low-income, culturally diverse families are involved. Through three focus groups, we examined the beliefs of 16 low-income Latina mothers of young adults with developmental disabilities about their relationships with the educational and service delivery systems. Primary concerns identified were (a) poor communication, (b) low effort in providing services, (c) negative attitudes of professionals toward the client–children, (d) negative treatment of parents by professionals, and (e) the mother's role as central to the well-being of her child. Mothers tended to adopt a posture of alienated advocacy in relation to their child's educational and service needs.
Sharp, K. & Earle, S. (2002). Feminism, abortion, and disability: Irreconcilable differences. Disability & Society, 17
There has been considerable discussion of the political allegiance between the feminist and disability movements, but the question of abortion remains a thorny one. Disability rights advocates have been keen to demonstrate that it is possible to believe in a woman's right to sovereignty over the body and, yet, be opposed to the selective abortion of an impaired foetus—discribing the latter as a form of “weak” eugenics. The aim of this paper is to show that, whilst there may be some points of agreement between the feminist and disability movements on the question of abortion, there exist fundamental and irreconcilable differences.
Shaul, S., Dowling, P. J., & Laden, B. F. (1985). Like other women: Perspectives of mothers with physical disabilities. In M. J. Deegan & N. A. Brooks (Eds.), Women and disability: The double handicap
(pp. 133 142). New Brunswick, NJ: Transaction Books.
This chapter is based on interviews with ten mothers who have physical disabilities and discusses pre-pregnancy considerations; pregnancy, labor and delivery; the physical caring for a young child; and discipline of children. The authors address some of the common misconceptions about motherhood and disability and discuss the advantages and disadvantages of being a mother with a disability.
Shearer, D. L., Mulvihill, B. A., Klerman, L. V., Wallander, J. L., Hovinga, M. E., &. Redden, D. T. (2002, September/October). Association of early childbearing and low cognitive ability. Perspectives on Sexual and Reproductive Health, 34
(5), 236-243. Context:
Teenage pregnancy remains a pressing social issue and public health problem in the United States. Low cognitive ability is seldom studied as a risk factor for adolescent childbearing. Methods:
Data from the National Longitudinal Survey of Youth were used in a matched-pairs nested case-control study comparing women who had a first birth before age 18 with those who did not. Significant differences in Armed Forces Qualifications Test scores and in reproductive and social intervening variables were determined using chi-square analyses and t-tests. Multiple logistic regression models determined the independent effects of specific factors on early childbearing. Results:
Women who had their first birth before age 18 had significantly lower cognitive scores than others; women with a second birth before age 20 had significantly lower scores than those with one teenage birth. On average, women with the lowest cognitive scores initiated sexual activity 1.4 years earlier than those with the highest cognitive scores. Among those who had had a sexuality education course, a smaller proportion of women had scores in the first quartile for the overall sample than in the fourth quartile (20% vs. 28%); an even greater difference was seen among women who correctly answered a question about pregnancy risk (14% vs. 43%). Both poverty and low cognitive ability increased the odds of early childbearing. Conclusions:
Young women with low cognitive ability are at increased risk for early initiation of sexual activity and early pregnancy. Further research is needed to design interventions that consider this population's specific information and support needs.
Shildrick, M. (2004, August). Genetics, normativity, and ethics: Some bioethical concerns. Feminist Theory, 5
Where feminist critiques of bioscience have uncovered a whole set of operations that range round the Foucauldian notions of biopower and normativity, and have explored genetic discourse in particular to question the stability of self-identity, feminist bioethics has lagged behind. Despite an engagement with the technologies of postmodernity, including those associated with genetic research (and especially in its relation to reproduction), there has been, with relatively few exceptions, a reluctance to explore the implications of postmodernist theory. The difficulty is that bioscience itself is now throwing up a problematic that destabilizes the central agent of ethical theory - the modernist sovereign subject. Using the field of genetics and the mapping of the human genome as a focal point, this paper suggests that bioethics should move on from conventional analytic strategies and, like feminist science studies, embrace uncertainty and complexity. The task is to fashion a new form of ethical response grounded in the notions of embodied connection and fluidity.
Siegrist, M., Cousin, M. & Keller, C. (2008, January). Risk communication, prenatal screening, and prenatal diagnosis: The illusion of informed decision-making. Journal of Risk Research, 11
Pregnant women's knowledge of prenatal tests was assessed in face-to-face interviews. The focus of the study was on how physicians communicate test results to their clients and whether women possess enough information to make informed decisions. Thirty-five women located in the German-speaking part of Switzerland participated in the study, which was based on half-standardized interviews lasting about an hour. Standardized questions were used to measure women's knowledge of prenatal tests. In selecting women to participate in the study, we ensured that they were counseled by different physicians. Results showed that most participants overestimated the risk of having a baby with Down syndrome. Most women had difficulties in interpreting a positive test result associated with blood tests (i.e., PAPP-A), but almost all women knew that this test provides a probabilistic outcome. Most women had very accurate knowledge of the risk of a miscarriage associated with invasive tests (i.e., amniocentesis, chorionic villus sampling). A substantial percentage of the women, however, did not realize that the invasive tests are also probabilistic tests. Overall, results of our study suggest that approaches to risk communication vary across physicians. There seems to be no standardization in counseling. In addition, our results suggest that many pregnant women may lack the knowledge necessary to make informed decisions regarding prenatal tests.
Silverman, J. (2006). A feminist activist raises a son with autism. off our backs, 36
This brief article recounts the author’s experiences as a feminist-activist-mother, including letting go of her expectations and battling “the system” while raising a child with autism.
Simpson, D., Hanley, J. J., & Quinn, G. (2002). Refrigerator mothers
[Film]. Chicago: Kartemquin Films.
From the 1950s through the 1970s, children with autism were widely thought to be victims of inadequate parenting. Influenced by Psychologist Bruno Bettelheim, mental health and medical professionals claimed that autism was the product of mothers who were cold, distant, rejecting--unable to "bond properly." They were labeled "refrigerator mothers." Though this disastrous theory began to be seriously challenged in the mid-1960s, its effects lingered for decades. As recently as 1996, producer J. J. Hanley was told that her son's odd behaviors were the result of overanxious and overbearing mothering. Her family wasted many critical early intervention months before her son was finally diagnosed with autism.
In Refrigerator Mothers
, seven women share their poignant stories. All but one were told by psychologists or physicians that they were to blame for their child's autism. The only exception, who is African-American, was told that her son could not be autistic because she did not fit the usual pattern: middle class, highly educated, and white. She was told, instead, that her son must be emotionally disturbed. Yet these courageous women refused to be crushed by the burden of blame. Today, they have strong, supportive relationships with their now adult sons and daughters and, in a variety of ways, have helped them to find their place in the world. Offering fascinating insights into the history of our understanding of mental illness and developmental disabilities, this fascinating and disturbing video raises questions that are of profound relevance today.
The video features historic broadcast interviews with Bettelheim himself, as well as excerpts from both Hollywood features and mental health "training films" of the period.
Contemporary context is provided by psychiatrist and author Robert Coles, MD, of Harvard; by Richard Pollak, author of The Creation of Dr. B: A Biography of Bruno Bettelheim
; and by research psychologist Bernard Rimland, PhD, whose 1964 book, Infantile Autism
, challenged Bettelheim's "bad mothering" thesis and argued for an understanding of autism as a biological disorder.
A reader's guide can be downloaded at: http://www.kued.org/diversevoices/RM-guideHiRes02.pdf
Skinner, D., Bailey Jr., D. B., Correa, V., & Rodriguez, P. (1999, Summer).
Narrating self and disability: Latino mothers' construction of identities vis-a-vis their child with special needs. Exceptional Children, 65
We examine how 150 Latino mothers of young children with developmental disabilities use narratives to express and create self-understandings vis-it-vis their child. The purpose is twofold: (a) to introduce narrative as a tool that people use to make sense of disability, and (b) to demonstrate how these mothers draw on cultural beliefs and the narrative form to construct meanings of self in relationship to disability. An analysis of spontaneous narratives of self and disability reveal that the majority of mothers portrayed themselves as good mothers in line with larger cultural notions, and viewed their child as bringing about positive transformations in their lives. We end by suggesting ways that narrative analysis could be used in future research and practice.
Skok, A., Harvey, D., & Reddihough, D. (2006, March). Perceived stress, perceived social support, and wellbeing among mothers of school-aged children with cerebral palsy. Journal of Intellectual & Developmental Disabilities, 31
(1), 53- Background:
The study considers how severity of disability, perceived stress, and perceived social support impact on the wellbeing of a group of mothers caring for school-aged children with cerebral palsy. Method:
Forty-three mothers attending clinics at the Royal Children's Hospital in Melbourne, Australia were interviewed and completed the Profile of Adaptation to Life Scale, the Satisfaction with Life Scale, the Perceived Stress Scale, and the Multidimensional Scale of Perceived Social Support. Results:
The results confirmed that severity of disability was not significantly related to maternal wellbeing, but that perceived stress and perceived social support significantly predicted wellbeing, both independently and together. Conclusion:
Social support was found to have a slight to moderate role in mediating the impact of stress on these mothers.
Smith, A. (2005, Spring). Beyond pro-choice versus pro-life: Women of color and reproductive justice. NWSA Journal, 17
This paper argues that the pro-life versus pro-choice paradigm for understanding reproductive rights is a model that marginalizes women of color, poor women, women with disabilities, and women from other marginalized communities. The pro-life versus pro-choice paradigm serves to both reify and mask the structures of white supremacy and capitalism that undergird the reproductive choices that women make. While both camps of the pro-choice and pro-life debate give lip service to addressing the concerns of women of color, in the end the manner in which both articulate the issues at stake contributes to their support of political positions that are racist and sexist and which do nothing to support either life or real choice for women of color. Instead, women of color activists should develop alternative paradigms for articulating reproductive justice that make critiques of capitalism and criminalization central to the analysis rather than simply expand either pro-choice or pro-life frameworks.
Smith, E., Murray S., Yousafzai A., & Kasonka L. (2004, January). Barriers to accessing safe motherhood and reproductive health services: The situation of women with disabilities in Lusaka, Zambia. Disability and Rehabilitation, 26
(2), 121-127. Purpose:
To ascertain how well health services in Lusaka, Zambia currently meet the safe motherhood and reproductive health care needs of women who have physical impairment leading to disability. Methods:
A qualitative study was conducted in Lusaka, Zambia. In-depth tape-recorded interviews were conducted with 24 purposively selected women with disabilities and with 25 safe motherhood/reproductive public sector health service providers. Qualitative analysis was conducted using NVivo software. Results:
Women with disabilities encounter various social, attitudinal and physical barriers to accessing safe motherhood and reproductive health (RH) services in this particular setting. The strong desire for children and affection can increase vulnerability to sexual exploitation. At the same time, a generalized assumption among reproductive health service providers that women with disabilities will not be sexually active, and not require RH services, leads to increased vulnerability to sexually transmitted infection including HIV. Once pregnant, traditional beliefs about transmission of disabilities can create barriers to integration in ante-natal clinics. Nurse-midwives' fear of delivery complications in women with physical impairments can also result in routine over-referral to a tertiary maternity facility which is outside the locality and harder for women with mobility limitations to get to. Conclusion:
Greater understanding of the influences underpinning societal attitudes towards sexuality and disability in this setting, and more extensive communication between health care staff and women with disabilities would facilitate positive action towards improving safe motherhood and reproductive health services for women with disabilities.
Smith, L.E., Seltzer, M.M., Tager-Flusberg, H., Greenberg, J.S., & Carter, A.S. (2008, May). A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 38
The present study examined the impact of autism symptoms and coping strategies on the well-being of mothers of children with autism spectrum disorder (ASD). The sample consisted of 153 mothers of toddlers and 201 mothers of adolescents drawn from two ongoing, longitudinal studies of families of individuals with ASD. For mothers of toddlers, lower levels of emotion-focused coping and higher levels of problem-focused coping were generally associated with better maternal well-being, regardless of the level of child symptomatology. For mothers of adolescents, coping often acted as a buffer when autism symptoms were high. Although there was evidence of maternal distress in both groups, the presence of significant buffering effects reflects adaptation in the face of stress, particularly for mothers of adolescents.
Spinal Cord Injury Information Network. (1997). Reproductive health for women with spinal cord injury: Part I: The gynecological examination
[Film]. Birmingham, AL: UAB RRTC on Secondary Complications of SCI & Office of Research Services.
Educates healthcare providers on how to safely and comfortably manage the annual GYN exam, breast self-exams and mammograms, and menstrual management.
Spinal Cord Injury Information Network. (2003). Reproductive health for women with spinal cord injury: Part II: Pregnancy & delivery
[Film]. Birmingham, AL: UAB RRTC on Secondary Complications of SCI & Office of Research Services.
Features experiences of women with SCI who have children along with suggestions from professionals on ways to manage medical issues related to pregnancy, labor and delivery.
Stehlik,D. (2000, January). Aging mothers and aging daughters: Life-long caring and intellectual disability. Journal of Women & Aging, 12
While aging and caring are well-discussed in academic literature, the association among aging, caring and intellectual disability is less well documented. This paper draws on a recently completed Australian study which focuses on such mother/daughter relationships and whose narratives form the framework for an argument for a re-imagining of the concept of care for aged people with intellectual disability. Specifically, using a genealogical approach, the paper describes how powerful discourses at the time of the daughter's birth (1940s and 1950s) -associated with eugenics, institutional care and motherhood -are framing the way in which aging mothers are now contemplating the future care for their adult (and also aging) daughters.
Stokes Gottlieb, A. (1997, January). Single mothers of children with developmental disabilities: The impact of multiple roles. Family Relations, 46
The impact of employment status and a nonspousal partner on the overall well-being of 148 single mothers of children with developmental disabilities was assessed through self-report questionnaires. Although generally multiple roles were associated with greater well-being, the quality of the roles (perceived helpfulness of the partner and perceived financial importance of the job) was more predictive. In fact, interaction effects indicated that having a supportive partner was associated with greater well-being for mothers whose employment did not provide the primary family income (partial providers). Among those without a supportive partner, mothers who were partial providers reported greater well-being than did nonemployed mothers or primary provider mothers.
Strong, M. F. (1999, May). Serving mothers with disabilities in early childhood education programs. Young Children, 54
Provides information for workers in early childhood programs about the needs of disabled mothers. Gives suggestions for accommodating mothers with various disabilities, including physical, psychiatric, sensory, cognitive, or learning disabilities. Explains that some disabilities are "hidden." Describes accessibility needs and lists information resources. Suggests ways to make a program more welcoming to mothers with disabilities.
Strong, M. F., & Haight-Liotta, S. (1997). When a mother has a disability: Dealing with disability in the AFDC and CPS systems.
Oakland, CA: Berkeley Planning Associates, Meeting the Needs of Women with Disabilities: A Blueprint for Change.
Booklet designed for social workers in Aid to Families with Dependent Children (AFDC) and Child Protective Services (CPS) programs who are working with mothers who have disabilities. Topics include a brief introduction to mothers with disabilities and typical discrimination faced by the population; work-welfare requirements as they relate to women who have disabilities; social service requirements under the Americans with Disabilities Act (ADA); disability-specific considerations; and strategies for improving social service program provisions to mothers with disabilities. An appendix includes bibliographies and resources.
Taylor, M., & Carlson, G. (1993). The legal trends--Implications for menstruation/fertility management for young women who have an intellectual disability. International Journal of Disability, Development and Education, 40
This paper reviews Family Court of Australia cases concerning performing hysterectomies on premenarchal women who have an intellectual disability, with specific reference to relevant Australian legislation. The paper discusses the implications for women who have an intellectual disability, which may have international applicability.
Taylor, N. E., Wall, S. M., Liebow, H., Sabatino, C. A., Timberlake, E. M., & Farber, M. Z. (2005, Fall). Mother and soldier: Raising a child with a disability in a low-income military family. Exceptional Children, 72
This article presents the results of a study of six low-income women, each of whom is raising a child with a suspected or diagnosed disability while also serving as an active member of the armed forces. Their experiences as they attempt to strike a balance between the highly demanding work role of the military and their role as a mother of a child with disabilities are examined. This article also discusses the personal strengths these women display, the barriers they confront, the strategies they use to negotiate competing demands, and the impact of this effort on their personal and professional lives. Practice and policy implications are drawn for early intervention and family support programs.
Tenzer, S. A., Murray, D. W., Vaughan, C. A., & Sacco, W. P. (2006). Maternal depressive symptoms, relationship satisfaction, and verbal behavior: A social-cognitive analysis. Journal of Social and Personal Relationships, 23
Two studies applied a social-cognitive interpersonal process model to investigate mechanisms underlying the association of maternal depressive symptoms with maternal relationship satisfaction and maternal verbal behavior. Study 1 participants were 86 mothers of 6–12-year-old children with a history of ADHD. Study 2 participants were 81 mother–child dyads recruited from a children’s inpatient unit and the surrounding community. Negative trait perceptions and negative affective reactions mediated the effect of maternal depressive symptoms on both maternal relationship satisfaction and maternal verbal behavior. The link between maternal depression level and negative maternal reactions remained after controlling for the child’s psychological problems. Results support the value of applying social-cognitive constructs to clinical problems that are embedded in distressed interpersonal relationships.
Thomas, C. (1997, November). The baby and the bath water: Disabled women and motherhood in social context. Sociology of Health & Illness, 19
The aim of this paper is to explore key dimensions of the reproductive experiences of disabled women who are, or who are thinking about becoming, mothers. The paper reports a qualitative study which involved semi-structured interviews with 17 disabled women who were contemplating childbearing, or were pregnant, and/or had young children. The interpretation of these women's experiences is situated with reference to current debates on the meaning and nature of disability, and draws attention to the ways in which these experiences can be understood as manifestations of disablism. More specifically, the paper considers three themes which emerged in the data analysis: the women's engagement with the medical `risk' discourse; the pressure felt by disabled women to demonstrate that they are, or could be, `good enough mothers'; and their experiences of receiving unhelpful `help' from health and social care workers.
Titchkosky, T. (2005, Summer). Clenched subjectivity: Disability, women, and medical discourse. In G. Goggin & C. Newell (Eds.), Theme Issue: Technology, Part 2. Disability Studies Quarterly 25
(3). Retrieved November 9, 2005 from http://www.dsq-sds.org/_articles_html/2005/summer/titchkosky.asp
Situated at the intersection of disability and feminist theory, this paper conducts an analysis of a way that women and disability are made meaningful in everyday life. The paper analyzes a seemingly ordinary newspaper story of disability; the story begins by telling of a woman who knowingly remains pregnant with a disabled fetus; goes on to provide statistics of similar cases and ends narrating the lives of families with disabled members. Bypassing the pro-choice/pro-life form of argument, I delve into the newspaper's medicalized textual rendering of disability and women and show how the meanings of both are enacted. I demonstrate the ways that text organizes the reader's consciousness so as to reproduce women as the embodiment of uncontrollable subjectivity and reproduce disability as nothing other than devalued lack. By interrogating the processes involved in medicalizing life through its technologies, the paper exemplifies the socio-political necessity of regarding text as a form of social action in need of critical analysis.
Tremain, S. (2006, February). Reproductive freedom, self-regulation, and the government of impairment in utero. In R. Kukla (Ed.), Maternal Bodies [Special Issue]. Hypatia, 21
This article critically examines the constitution of impairment in prenatal testing and screening practices and various discourses that surround these technologies. While technologies to test and screen (for impairment) prenatally are claimed to enhance women's capacity to be self-determining, make informed reproductive choices, and, in effect, wrest control of their bodies from a patriarchal medical establishment, I contend that this emerging relation between pregnant women and reproductive technologies is a new strategy of a form of power that began to emerge in the late eighteenth century. Indeed, my argument is that the constitution of prenatal impairment, by and through these practices and procedures, is a widening form of modem government that increasingly limits the field of possible conduct in response to pregnancy. Hence, the government of impairment in utero is inextricably intertwined with the government of the maternal body.
Trute, B., Benzies, K. M., Worthington, C., Reddon, J. R., & Moore, M. (2010, March). Accentuate the positive to mitigate the negative: Mother psychological coping resources and family adjustment in childhood disability. Journal of Intellectual & Developmental Disability, 35
(1), 36–43. Background:
Mothers’ cognitive appraisal of the family impact of childhood disability and their positive affect as a psychological coping resource, both key elements of the process model of stress and coping, were tested as explanatory
variables of family adjustment. Method:
In a sample of Canadian families, 195 mothers of children with intellectual and developmental disability completed telephone interviews. Results:
In regression modelling, 35% of the variance in family adjustment was explained by mothers’ positive cognitive appraisal of family impacts of childhood disability and by their positivity (ratio of positive to negative affect). After controlling for positivity, negative cognitive appraisal of family impacts of childhood disability was non-significant. Conclusions:
Family adjustment to childhood disability is associated with elements of strength in mothers’ psychological coping; namely, their ability to perceive positive family consequences of childhood disability and to maintain higher proportions of positive emotion in their daily activities. The findings of this study provide support for the broaden-and-build theory to explain the role of positivity in mothers’ coping and adjustment to childhood disability.
Tymchuk, A. J. (1994). Depression symptomatology in mothers with mild intellectual disability: An exploratory study. Journal of Intellectual & Developmental Disability, 19
The Beck Depression Inventory was administered to mothers with a history of mild intellectual disability and to mothers in a contrast group. The results showed that not only did mothers with intellectual disability score significantly higher on the Beck, but also three times as many of these mothers scored above a frequently used cutoff score considered to be indicative of depression. There were also differences in patterns of symptomatology. Further studies are suggested where relationships between depression symptomatology and childcare in mothers with intellectual disability should be examined.
Virtanen, T., & Moilanen, I. (1992, December). Mothers of children with mild neurological disabilities: Adaptational outcomes. International Journal for the Advancement of Counselling, 15
The relations of stress and coping over time were investigated among mothers of children (N=36) with mild neurological disabilities and mothers of matched non-disabled (ND) children (N=36). Separate stress groups were formed with respect to changes in adaptational outcomes for the mothers of disabled and ND children. Mothers of disabled children with better adaptational outcomes had considered their self-esteem higher and used problem-focused coping and social support more often than mothers of disabled children with worse adaptational outcomes. Decrease of negative affects seemed to presuppose use of problem-focused coping more often mothers of disabled children than for those of ND children.
Wachtel, K., & Carter, A. S. (2008, September). Reaction to diagnosis and parenting styles among mothers of young children with ASDs. Autism, 12
When a child is diagnosed with an autism spectrum disorder (ASD) parents often experience a range of difficult feelings, which typically are not addressed in child-focused interventions. This study examined the relationship between a mother's acceptance of and sense of resolution regarding her child's diagnosis of an ASD and maternal interaction style, controlling for child competence, autism symptoms and maternal depression. Participants included 63 children with an ASD between 20 and 50 months of age and their mothers. Mothers who were more emotionally resolved were rated as higher in Cognitive Engagement and Supportive Engagement in play interactions, reflecting greater verbal and nonverbal scaffolding to enhance the child's play and attention to activities and greater reciprocity and mutual enjoyment. This study highlights the importance of considering a mother's resolution about her child's diagnosis, suggesting that maternal emotions and cognitions associated with the diagnosis may be potential targets for intervention.
Warfield, M. E. (2001, August). Employment, parenting, and well-being among mothers of children with disabilities. Mental Retardation, 39
The influence of employment on parenting stress among mothers of 5-year-old children with developmental disabilities and the influence of parenting demands (i.e., caregiving difficulty and behavior problems) and family support on their work quality and absenteeism from work was examined. No significant associations were found between employment status and parenting demands, family support, or stress for the sample as a whole. Among employed mothers, those who rated their jobs as interesting reported significantly less parenting stress when they experienced low or mean levels of parenting demands. Mothers' interest in work did not moderate the negative influence of high levels of parenting demands on stress. Finally, parenting demands increased absenteeism but had no effect on work quality. Implications of these findings are discussed.
Wates, M. (1999). Bigger than the sky: Disabled women on parenting.
London: The Women’s Press, Ltd.
This unique anthology challenges rigid, limiting views of what it means to be a disabled woman, and of what a parent is and does. Disabled women describe having to fight for the right to become pregnant, the poignant pleasure of teaching children the benefits of having a "different" mother; and the sheer delight of involving themselves in a child's life. Whether it be a birth mother, an adoptive parent, a godparent, a friend, or a woman who has made a positive choice not to become a parent, these disabled women are asserting their right to explore the diversity of experience. And in breaking free of society's restrictive definitions and taboos, the writers in this collection demonstrate that the possibilities are limitless.
Wates, M. (2002, Summer). Disability and adoption: How unexamined attitudes discriminate against disabled people as parents. Adoption & Fostering, 26
For many years, the author has been involved in developing peer support and a campaigning network of disabled parents in the UK. She considers that, while disabled children & adoption have been the focus of some debate, the issue of adoption has received far too little attention in relation to disabled adults. This article seeks to redress the balance by looking first at how children with disabled parents are over-represented in the looked after system. Wates goes on to discuss the ways in which disabled people are overlooked as potential adoptive parents. In conclusion she outlines the implications for practice regarding both these related areas of concern.
Watkins, S. J., & Mash, E. J. (2009, February). Sub-clinical levels of symptoms of attention-deficit/hyperactivity disorder and self-reported parental cognitions and behaviours in mothers of young infants. Journal of Reproductive and Infant Psychology, 27
This study examined the relationship between sub-clinical levels of maternal symptoms of attention-deficit/hyperactivity disorder (ADHD) and parental cognitions and behaviours in a community sample of mothers of young infants. Given the numerous impairments experienced by adults with ADHD, it was hypothesised that mothers with more symptoms of ADHD would report cognitive and behavioural difficulties related to parenting. Ninety-nine mothers of 6-month-old infants were recruited from immunisation clinics and completed questionnaires. Maternal symptoms of ADHD were positively correlated with other symptoms of psychological distress. In addition, mothers with higher levels of ADHD symptoms described themselves as having less parental impact and lower parenting satisfaction. They also reported more hostile-reactive behaviours, but only for more difficult infants. ADHD symptoms were not related to social support and did not predict maternal self-efficacy over and above co-occurring symptoms of psychological distress. Findings suggest that even mothers who experience sub-clinical levels of ADHD symptoms may be at risk for parenting cognitions and behaviours that could adversely affect their infant's development. Further studies of mothers who display clinical levels of ADHD symptoms are needed to replicate the current findings and to examine other dimensions of parenting in this potentially high-risk population of mothers and their infants.
Waxman, B. F. (1994). Up against eugenics: Disabled women's challenge to receive reproductive health services. Sexuality and Disability, 12
This article is an overview of the health status of disabled women. The author focuses on the politics of eugenics as the explanatory factor in why disabled women are devalued as reproductive beings, why they have little access to women's health services, and why they are faced with contraceptive choices which may pose a threat to their reproductive health and freedom (i.e., Depo Provera). Waxman poses research questions which would be of benefit to women with disabilities as well as promote reproductive rights and the disabled feminist movement.
Weeks, L. E., Bryanton, O., Kozma, A., & Nilsson, T. (2008). Well-being of mid-and later-life mothers of children with developmental disabilities. Journal of Women & Aging, 20
This study examined the well-being of mid- and later-life mothers of developmentally disabled (DD) children. Mothers of DD children (n = 33) and mothers in a comparison group (n = 27) responded to a series of quantitative measures of well-being and open-ended questions. In general, quantitative results indicated lower levels of well-being for mothers of DD children. However, we examined these results within the contexts of educational and financial realities and access to adequate social support. Analysis of the qualitative data resulted in the themes of enhancements to well-being, challenges to well-being and normative experiences of being a parent. Results point to the need to further understand reciprocity in the mother-child relationships and the influence of severity of the developmental disability on mother's well-being.
Weiss, M. J. (2002, March). Hardiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism, 6
This study assessed the effects of social support and hardiness on the level of stress in mothers of typical children and children with developmental disabilities. One hundred and twenty mothers participated (40 mothers of children with autism, 40 mothers of children with mental retardation, and 40 mothers of typically developing children). Results indicated significant group differences in ratings of depression, anxiety, somatic complaints and burnout. Regression analyses were conducted to determine the best predictors of the dependent measures. Both hardiness and social support were predictive of successful adaptation. The relationships among hardiness, support and coping are discussed.
Weissman, M. M., Pilowsky, D. J., Wickramaratne, P. J., Talati, A., Wisniewski, S. R., Fava, M., Hughes, C. W., Garber, J., Malloy, E., King, C. A., Cerda, G., Sood, A. B., Alpert, J. E., Trivedi, M. H., & Rush, A. J. (2006, March 22/29). Remissions in maternal depression and child psychopathology: A STAR*D-Child Report. JAMA, the Journal of the American Medical Association, 295
(12), 1389-1398. Context:
Children of depressed parents have high rates of anxiety, disruptive, and depressive disorders that begin early, often continue into adulthood, and are impairing. Objective:
To determine whether effective treatment with medication of women with major depression is associated with reduction of symptoms and diagnoses in their children. Design:
Assessments of children whose depressed mothers were being treated with medication as part of the multicenter Sequenced Treatment Alternatives to Relieve Depression (STAR*D) trial conducted (between December 16, 2001 and April 24, 2004) in broadly representative primary and psychiatric outpatient practices. Children were assessed by a team of evaluators not involved in maternal treatment and unaware of maternal outcomes. Study is ongoing with cases followed at 3-month intervals. Setting and Patients:
One hundred fifty-one mother-child pairs in 8 primary care and 11 psychiatric outpatient clinics across 7 regional centers in the United States. Children were aged 7 to 17 years. Main Outcome Measures:
Child diagnoses based on the Kiddie Schedule for Affective Disorders and Schizophrenia; child symptoms based on the Child Behavior Checklist; child functioning based on the Child Global Assessment Scale in mothers whose depression with treatment remitted with a score of 7 or lower or whose depression did not remit with a score higher than 7 on the Hamilton Rating Scale for Depression. Results:
Remission of maternal depression after 3 months of medication treatment was significantly associated with reductions in the children's diagnoses and symptoms. There was an overall 11% decrease in rates of diagnoses in children of mothers whose depression remitted compared with an approximate 8% increase in rates of diagnoses in children of mothers whose depression did not. This rate difference remained statistically significant after controlling for the child's age and sex, and possible confounding factors (P = .01). Of the children with a diagnosis at baseline, remission was reported in 33% of those whose mothers' depression remitted compared with only a 12% remission rate among children of mothers whose depression did not remit. All children of mothers whose depression remitted after treatment and who themselves had no baseline diagnosis for depression remained free of psychiatric diagnoses at 3 months, whereas 17% of the children whose mothers remained depressed acquired a diagnosis. Findings were similar using child symptoms as an outcome. Greater level of maternal response was associated with fewer current diagnoses and symptoms in the children, and a maternal response of at least 50% was required to detect an improvement in the child. Conclusions:
Remission of maternal depression has a positive effect on both mothers and their children, whereas mothers who remain depressed may increase the rates of their children's disorders. These findings support the importance of vigorous treatment for depressed mothers in primary care or psychiatric clinics and suggest the utility of evaluating the children, especially children whose mothers continue to be depressed.
White, G. W., & White, N. L. (1993). The adoptive process: Challenges and opportunities for people with disabilities. In F. P. Haseltine, S. S. Cole, & D. B. Gray, Reproductive issues for persons with physical disabilities
(pp. 107-115). Baltimore: Paul H. Brookes Publishing Co.
This chapter addresses the barriers people with disabilities face when they seek to adopt a child. The authors discuss why people with disabilities choose to adopt and the typical channels used for adoption. White and White describe different types of adoptions and the fact that people with disabilities need to consider that not all adoption agencies may be right for their particular situation. They may want to be alert for patronizing behavior, to find accessible agencies, and to note if the agency is willing to accommodate them.
Whiteside, R. K., & Perry, D. L. (2001). Stereotype, segregate and eliminate: ‘Disability’, selective abortion and the context of ‘choice.’ interaction, 15
(2). Retrieved March 16, 2005 from http://www.people1stprogramme.com.au/files/Stereotype,%20Segregate%20and%20Eliminate.pdf
“At the time this paper is being written, abortion laws are on the verge of being repealed in Western Australia. Whatever one's personal opinion about the desirability of any outcome, this is a significant opportunity for careful consideration of both implicit and explicit ideas, influences and issues which have framed the so-called 'abortion debate'. This is of course a difficult task, requiring us to reflect upon how our own values and attitudes are formed, and how these are influenced by, and in turn, influence, the world around us.”
Whitman, B. Y., & Accardo, P. J. (Eds.). (1990). When a parent is mentally retarded.
Baltimore: Paul H. Brookes Publishing Co.
People with mental retardation who live in the community are marring and having children. The book is, at least partly, an attempt to answer the question: How can we solve the right of people who have mental retardation to have and raise children, and the rights of these children to have their basic needs met? The book addresses a wide range of issues. The first section is devoted to an epidemiological perspective and describes the editors’ study of parents who have mental retardation. They found, among other things, a serious lack of support services for these parents and that 25% of their children had been removed from their care. They also claim that these parents and their children are "hidden and at high risk." Another chapter in this first section takes a medical perspective and looks at genetics and mental retardation. The section on educational interventions describes the experiences of two programs which provide training for parents with mental retardation. The section on legality and ethics reviews the rights of adults with mental retardation to marry and have children, as well as the potential conflict of those rights with children's rights to adequate parenting.
This book contains a significant amount of useful information but it is a bit confusing that the contributors to this volume do not agree with each other on fundamental issues. Even the editors report that they disagree on issues such as sterilization of people with mental retardation and the rights of persons with mental retardation to marry.
The book is written from a service providers point of view and presents the "problem" as it is seen by those who provide services to parents with mental retardation. The book does not give insights into the lives of the parents or present their point of view. We do not learn what they think is important or what kind of support they identify as being important.
Finally, a note about language use. "Parenting," in most cases, really means "mothering," because child rearing is seen as being the primary responsibility of women. This book talks about parenting and does not mention the fact that problems with child rearing and interventions into family life to "correct" the problems or "support" the family, usually impacts the life of the mother to a much greater extent than it does the father's life. The book does not address how the interventions outlined, could influence the lives of women who have mental retardation and are struggling with motherhood.
Wilder, J., Koro-Ljungberg, M., & Bussing, R. (2009). ADHD, motherhood, and intersectionality: An exploratory study. In A. Thornton, B. B. McGee, & G. Stein Johnson (Eds.), Socio Cultural and Economic Influences on Nutrition and Health Status [Special issue]. Race, Gender & Class, 16
This exploratory qualitative study utilized an intersectional approach to explore the effects of race, class, and marital status upon identity construction and mothering strategies in eight women caring for children with attention deficit hyperactivity disorder (ADHD). The following research question guided this study: In what ways do the intersections of race, class, and marital status influence the context of identity construction and parenting practices, including nutritional interventions, for mothers of children with ADHD? Discourse analysis application revealed shared experiences of "good" mothering that centralized around two parallel roles and identities; additionally, mothers described divergent perspectives of mothering strategies related to mothering capital, discipline, and academic buffering. Of note, nutritional interventions were not described as a part of good mothering discourse and dietary management of ADHD symptoms did not emerge as a separate theme. Reviewing mothering experiences through an intersectional lens suggests that race, class, and marital status provide a complex and dynamic perspective on mothering.
Wing, A. (2002). Sometimes joy carries the day. Adoptive Families Magazine.
Retrieved March 16, 2005 from http://www.adoptivefamilies.com/articles.php?aid=279
“An accident left the author disabled but not defeated. Nowadays, having a disability doesn’t have to prevent you from adopting.”
Wong, S. I. (2002, Summer). At home with Down syndrome and gender. In E. Kittay, S. Silvers, & S. Wendell (Eds.), Special issue: Feminism and disability II. Hypatia, 17
"I argue that there is an important analogy between sex selection and selective abortion of fetuses diagnosed with Down syndrome. There are surprising parallels between the social construction of Down syndrome as a disability and the deeply entrenched institutionalization of sexual difference in many societies. Prevailing concepts of gender and mental retardation exert a powerful influence in constructing the sexual identities and life plans of people with Down syndrome, and also affect their families' lives."
Zirinsky-Wyatt, J. (1993). The prize: Disability, parenthood, and adoption. Women and Therapy, 14
This essay details the concerns and experiences of the author and her husband, an interracial couple with disabilities, during the process that culminated in the adoption of their daughter. The author discusses the reactions of others--relatives, social workers, doctors, lawyers, friends, and her husband--to her desire to have a child, and reveals her own considerations and fears. The study also documents the couple's experiences, good and bad, with fertility doctors, support groups, adoption agencies, and private adoption lawyers. The study should be of special interest to those involved or interested in the adoption process, particularly as it applies to disabled and/or interracial couples.