Women with Physical Disabilities: Perinatal Health and Motherhood
Here you will find a list of resources related to the perinatal health and motherhood experiences of women with physical disabilities. Some of these are academic resources, and some are community-created resources. Please contact me if you are unable to download a copy of any of the resources below.
A video about Karen, a spinal cord injured woman, paediatric social worker, passionate advocate for spinal cord injury care, and wife and mother of two young children. Karen is a member of the Spinal Cord Injury Perinatal Interest Group, a Vancouver, BC-based group of women, including clinicians and researchers with backgrounds in spinal cord injury and maternal fetal medicine, working to develop resources (including the one below) to improve the perinatal care experiences and outcomes of women with spinal cord injuries. For more information about this group, contact sexualhealth@rickhanseninstitute.org
Pregnancy and Spinal Cord Injury: An information booklet for women with SCI, Vancouver Coastal Health’s Sexual Health Rehabilitation Service, BC Women’s Hospital and Health Centre’s Maternal Fetal Medicine Service, Rick Hansen Institute, and Spinal Cord Injury BC (Guidebook; Canada)
The Disabled Woman’s Guide to Pregnancy and Birth, J. Rogers (Book; case studies; guidebook; United States)
Maternity Rolls: Pregnancy, Childbirth and Disability, H. Kuttai (Book; autoethnography; personal story; Canada)
Interactive site for clinicians serving women with disabilities, American Congress of Obstetricians & Gynecologists (Website with access to PowerPoint presentations; United States)
“We don’t know. We’ve never had anybody like you before”: Barriers to perinatal care for women with physical disabilities, L.A. Tarasoff (Academic article; some findings from my dissertation research – interviews with 13 women with physical disabilities; Ontario, Canada)
Information for Parents with Disabilities (Resources created by the National Research Center for Parents with Disabilities, with the support of the National Institute on Disability, Independent Living, and Rehabilitation Research, and the Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University). A number of downloadable information sheets that can be found on the above site, including:
- Advice for Professionals from Mothers with Disabilities
- Barriers and Facilitators to Motherhood with a Disability
- Self-Advocacy Tips for Pregnant Women with Physical Disabilities
- Strengths and Benefits of Parenting with a Disability
Recommendations about Pregnancy from Women with Mobility Disability to Their Peers, L.I. Iezzoni and colleagues (Academic article; interviews with 22 women with physical/mobility disabilities; United States)
Research by Monika Mitra and colleagues (Link list of the academic articles Dr. Mitra and her colleagues have published regarding the perinatal health of women with disabilities in the United States, much of it funded by the National Institutes of Health)
Parenting with a Disability Network, Centre for Independent Living – Toronto (Peer support and information-sharing network for parents and prospective parents with a disability; Canada). Contact: melanie.marsden@cilt.ca
Disabled Parenting Project, “an online space for sharing experiences, advice, and conversations among disabled parents as well as those considering parenthood. The DPP also serves as an information clearinghouse and interactive space for discussion and connection. The DPP hopes to inform social policy concerning this underserved population through the development of scholarly research, fact sheets, and training resources, as created by and for the community, and will set the stage for additional research and social action to address the important issues of discrimination and disparities” (United States)
Through the Looking Glass, Berkeley, California (Centre that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability or medical issue; a disability community-based nonprofit organization; United States)
Spring 2013 Magazine (Theme: Infertility and Parenthood), Finnish Association of the Spinal Cord Injured Akson, Helsinki, Finland (Magazine; Finland)
Pregnancy in Women with Physical Disabilities, 2010 Workshop, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health (Workshop schedule with access to PowerPoint presentations; United States)
Pregnancy in women with physical disabilities, C. Signore and colleagues (Academic article; summary of the above workshop; United States)
Dr. Caroline Signore: Exploring Pregnancy in Women with Disabilities, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health (Website with an interview and video in which Dr. Signore talks about current knowledge about pregnancies in women with disabilities; United States)
A Ramp to Motherhood: The Experience of Mothers with Physical Disability, O. Prilleltensky (Academic article; interviews and focus groups with 35 women; Canada)
‘Doing Motherhood’: Some experiences of mothers with physical disabilities, Grue & Laerum (Academic article; interviews with 30 women; Norway)
Experiences of Women with Physical Disabilities During the Perinatal Period: A Review of the Literature and Recommendations to Improve Care, L.A. Tarasoff (Academic article; review of barriers to care; mainly North America and Europe)
Pregnancy in women with physical disabilities, S.C. Smeltzer (Academic article; an overview of preconception, antenatal, pregnancy, and postpartum issues of women with disabilities; United States)
Reproductive Rights and Access to Reproductive Services for Women with Disabilities, A. Silvers, L. Francis, & B. Badesch (Academic article; United States)
Disability and childbirth: Meeting the challenges, E.M. Carty (Academic article; an overview of the care issues faced by women with disabilities as they cope with the specific challenges of pregnancy, labour and birth and adapt to the role of mother, as well as suggestions for physicians who care for these women)
Prevalence of current pregnancy among US women with and without chronic physical disabilities, L.I. Iezzoni and colleagues (Academic article; population-based study; United States)
Women with disability: The experience of maternity care during pregnancy, labour and birth and the postnatal period, M. Redshaw and colleagues (Academic article; population-based study; England)
Women with Disabilities: Barriers and Facilitators to Accessing Services During Pregnancy, Childbirth and Early Motherhood, National Disability Authority, C. Begley and colleagues (Report; review of the literature; Ireland)
Taking Care: Lessons from Mothers with Disabilities, M. Grimley Mason with L. Long-Bellil (Book; interviews; personal narratives; United States)
Sex, Disability And Motherhood: Access To Sexuality For Disabled Mothers, C.J. O’Toole (Academic article; overview of the barriers to sexuality facing mothers with disabilities; United States)
Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children, National Council on Disability (Report; United States)
Disabled Mothers: Stories and Scholarship by and about Mothers with Disabilities, edited by G. Filax and D. Taylor (20 scholarly works and personal accounts from Canada, the U.S., and Australia explores and analyzes issues of parenting by mothers with a variety of physical and mental disabilities. The book also delves into pregnancy, birth, adoption, child custody, discrimination, and disability politics. Noticing dominant ideas, meanings, and narratives about mothering and disability, as the contributors of this book do, exposes how the actual lives and experiences of mothers with disabilities are key to challenging cultural norms and therefore discrimination)
Pregnancy and Parenthood for People with Cerebral Palsy, Capability Scotland (Fact sheet; Scotland)
Being Pregnant with Cerebral Palsy (Youtube series by a mother with cerebral palsy in Ontario)
Eliminating Inequities for Women With Disabilities: An Agenda for Health and Wellness, edited by S.E. Miles-Cohen and C. Signore (Book about the health of women with disabilities)
The baby and the bath water: disabled women and motherhood in social context, C. Thomas (Academic article; interviews with 17 women; England)
If you are unable to access any of the resources, please contact me and I will send you a copy.
More coming soon!
LGBTQ Health and Gender, Sex, and Health
Queering Parenthood: A website with resources for LGBTQ parents, researchers, and service providers, particularly from a study examining the mental health of visible and invisible sexual minority women (Canada and US)
Re:searching for LGBTQ Health: The website for an interdisciplinary team of lesbian, gay, bisexual, transgender, transsexual, Two-Spirit, and queer (LGBTQ) and ally researchers based in Toronto who focus on understanding how LGBTQ people experience physical and emotional (mental) health, and how they access health services (based on Toronto, Canada)
Rainbow Health Ontario: A province-wide program working to improve access to services and promote the health of LGBTQ communities. Rainbow Health Ontario provides resources for all stakeholders including community groups, service providers, researchers, policymakers and educators. Their website also includes a handy service directory that lists health and social service providers as well as programs that have expressed a commitment to providing competent and welcoming care to LGBTQ people in Ontario (Canada)
The Fenway Institute: Based in Boston, the Fenway Institute works to make life healthier for LGBTQ people, people living with HIV/AIDS, and the larger community through research and evaluation, education and training, and public health advocacy (US)
The Trans PULSE Project: A community-based research project investigating the impact of social exclusion and discrimination on the health of trans people in Ontario, Canada. Visit their website to access academic and other resources produced from this important project (Canada)
The Williams Institute – Census & LGBT Demographic Studies: The Williams Institute is dedicated to conducting rigorous, independent research on sexual orientation and gender identity law and public policy. A think tank at UCLA Law, the Williams Institute produces high-quality research with real-world relevance and disseminates it to judges, legislators, policymakers, media and the public (US)
Centers for Disease Control and Prevention – Lesbian, Gay, Bisexual, and Transgender Health (US)
September 2017: Recently I was at a networking event for trainees who do research in the area of sex, gender, and health, and I was surprised to learn that very few graduate students and postdoctoral research fellows there had received formal training in sex, gender, and health research. Rather, most came to this area of research based on their own interests or the interests of their supervisors.
While there have been some major advances in the past decade or so regarding our understanding of and the integration of sex and gender into health research (e.g., the Canadian Institutes of Health Research (CIHR) requires anyone applying for a grant to report how their proposed project will take sex and gender into account), we still have a long way to go! Here are some useful resources on sex, gender, and health research:
Online Training Modules: Integrating Sex & Gender in Health Research (Institute of Gender and Health, CIHR)
What a Difference Sex and Gender Make: A Gender, Sex and Health Research Casebook (IGH, CIHR)
YouTube video of the Making Trans Health Count lecture (On November 21, 2016, the Dalla Lana School of Public Health, Mark S. Bonham Centre for Sexual Diversity Studies, Sexual and Gender Diversity Office, Public Health Students Association, and the Comparative Program on Health and Society, Munk School of Global Affairs hosted a special lecture and dialogue on “Making Trans Health Count: Inclusion of Trans and Non-Binary Participants in Public Health Research” featuring Dr. Greta Bauer, Professor at Western University and Dr. Alex Abramovich, Scientist at the Centre for Addiction & Mental Health)
Guidance Document: Considerations for Inclusion of Women in Clinical Trials and Analysis of Sex Differences (Government of Canada)
Science Fact or Science Fiction: Can medicine be personalized without sex and gender? (CIHR)
Women’s Xchange (Women’s College Hospital)
Incorporating intersectionality theory into population health research methodology: Challenges and the potential to advance health equity (G. Bauer in Social Science & Medicine)
Transgender-inclusive measures of sex/gender for population surveys: Mixed-methods evaluation and recommendations (G.R. Bauer, J. Braimoh, A.I. Scheim, and C. Dharma in PLoS ONE)
Designing and Conducting Gender, Sex, and Health Research (book edited by J.L. Oliffe and L. Greaves)
Intersectionality: Moving Women’s Health Research and Policy Forward (O. Hankivsky and R. Cormier. Vancouver: Women’s Health Research Network)
Integrating and evaluating sex and gender in health research (S. Day and colleagues in Health Research Policy and Systems)
How to study the impact of sex and gender in medical research: a review of resources (A. J. McGregor and colleagues in Biology of Sex Differences)
RHO Research Methods: Designing Surveys and Questionnaires (Rainbow Health Ontario)
Special issue of Social Science & Medicine on Gender and health: Relational, intersectional, and biosocial approaches (edited by K.W. Springer, O. Hankivsky, and L.M. Bates)
