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(1), 23-37.
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.
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.
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(3-4), 155-175.
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.
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.
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/journal/issues/vol10no2/download/aunos.pdf 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.
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."
Bell, S. E. (2004). Intensive performances of mothering: A sociological perspective.
Qualitative Research, 4(1), 45-75.
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(2-3), 79-96.
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.
Blackford, K. A. (1993). Erasing mothers with disabilities through Canadian family related policy.
Disability, Handicap & Society, 8(3), 281-294.
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.
Blumberg, L. (1994). The politics of prenatal testing and selective abortion.
Sexuality and Disability, 12(2), 135-153.
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(4), 431-442.
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.
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(4), 432-461.
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.
Brookes, A. (2001, June). Women's voices: Prenatal diagnosis and care for the disabled.
Health Care Analysis, 9(2), 133-150.
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(2), 181-198.
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.
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(4), 455-472.
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(2), 53-65.
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.
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 Collins, C. (1999). Reproductive technologies for women with physical disabilities.
Sexuality and Disability, 17(4), 299-307.
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(1), 14-29.
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_Fall_08.pdf 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.
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(3), 223-232.
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(5), 354-360.
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(3), 195-200.
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.
Drakes, O. (1984, March). Spina bifida and motherhood.
Special Education: Forward Trends, 11(1), 16-18.
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.
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(3).
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.
Ettorre, E. (2000). Reproductive genetics, gender and the body: 'Please doctor, may I have a normal baby?'
Sociology, 34(3), 403-420.
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.
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(3), 480-497.
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.
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."
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.
Garippo, G. (2003). Just for women: Pregnancy and SCI: Things to consider.
PN/Paraplegia News, 57(3), 18-19.
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.
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(3), 631-642.
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.
Gregg, R. (1993, September). "Choice" as a double-edged sword: Information, guilt and mother-blaming in a high-tech age.
Women & Health, 20(3), 53-73.
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(6), 671-683.
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(6), 632-649
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.
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."
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.
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.”
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.”
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(1), 117-132.
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.
Kallianes, V., & Rubenfeld, P. (1997, April). Disabled women and reproductive rights.
Disability & Society, 12(2), 203-222.
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., & 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(1), 81-88.
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.
Killoran, C. (1994). Women with disabilities having children: It's our right too.
Sexuality and Disability, 12(2), 121-126.
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.
Kocher, M. (1994). Mothers with disabilities.
Sexuality and Disability, 12(2), 127-133.
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.
Kukla, R. (Ed.). (2006, Winter). Maternal bodies [Special issue].
Hypatia, 21(1).
"…[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."
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(2-3), 121-139.
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.
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(3), 121-144.
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(2), 176-188.
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(3), 379-403.
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(2), 175-185.
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.
Lipson, J. G., & Rogers, J. G. (2000). Pregnancy, birth, and disability: Women’s health care experiences.
Health Care for Women International, 21(1), 1–26.
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.
Llewellyn, G., McConnell, D., & Mayes, R. (2003, February). Health of mothers with intellectual limitations.
Australian and New Zealand Journal of Public Health, 27(1), 17-19.
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.
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(3), 300-307.
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.
Malacrida, C. (2002). Alternative therapies and Attention Deficit Disorder: Discourses of maternal responsibility and risk.
Gender & Society, 16(3), 366-385.
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.
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.
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(2), 122-134.
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.
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(2), 179-197.
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.”
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(2), 93-102.
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.
Milliken, P. J. (2001, January-February). Disenfranchised mothers: Caring for an adult child with schizophrenia.
Health Care for Women International, 22(1-2), 149-166.
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.
"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(1), 41-55.
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(2) 118-129.
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.
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.
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(2), 113-127.
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(2), 122-130.
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.
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(1), 18-24.
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_Fall_08.pdf 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.
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.
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(3), 118-142.
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.
Press, N., & Browner, C. H. (1997, October). Why women say yes to prenatal diagnosis.
Social Science & Medicine, 45(7), 979-989.
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(3), 209-223.
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., 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(4), 335-346.
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.
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(9), 1857-1866.
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.
Read, J. (2000).
Disability, the family and society: Listening to mothers. 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.
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.
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(1), 48-55.
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, 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(1), 141-146.
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.
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.
Savulescu, J. (2002, October). Deaf lesbians, ‘designer disability,’ and the future of medicine.
British Medical Journal, 324(7367), 771-773.
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(11/2), 18-24.
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.
Schneider, B. (2005, June). Mothers talk about their children with schizophrenia: A performance autoethnography.
Journal of Psychiatric & Mental Health Nursing, 12(3), 333-340.
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(1), 65-82.
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.
Sharp, K. & Earle, S. (2002). Feminism, abortion, and disability: Irreconcilable differences.
Disability & Society, 17(2) 137-145.
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.
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 Smith, A. (2005, Spring). Beyond pro-choice versus pro-life: Women of color and reproductive justice.
NWSA Journal, 17(1), 119-140.
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.
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.
Strong, M. F. (1999, May). Serving mothers with disabilities in early childhood education programs.
Young Children, 54(3), 10-17.
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: Deal