Study Updates 1-10

Update #1 – December 2, 2014

Recruitment officially began in late October and is going well. I have interviewed 3 amazing women so far and have 3 more interviews scheduled for next week. Thank you to everyone who has shared my call for participants and to the women who have shared their stories with me so far – I look forward to talking to more of you soon!

I have submitted abstracts about the study to the Society for Disability Studies Conference, the American Psychological Association Convention, and the Association of Ontario Midwives Conference. If all goes well, I will be presenting preliminary findings of the study at these events this summer.

Interesting article: #YesAllWomen, but Not Really: How Feminism Leaves the Disabled Behind, E. Heideman (The Daily Beast)

Update #2 – December 11, 2014

I have now completed interviews with 5 women. I have 2 more interviews scheduled before I take a break to focus on transcribing the interviews and for the holidays. I am already starting to recognize common themes among the participants’ experiences, even though all of the women I have interviewed thus far have different types of mobility-limiting conditions (e.g., spinal cord injury, cerebral palsy). For instance, all women report encountering health care providers who know very little about the interaction of disability, pregnancy, labour, and delivery – a finding that is common in the (limited) literature on this topic. Likewise, most women report difficulties finding information themselves. Many of the women I have interviewed have talked about the challenges that they experience carrying, lifting, and getting down on the floor to play with their children, often due to their mobility limitations, such as limited hand/arm function, and/or chronic pain – an issue taken for granted by non-disabled parents and care providers. Similarly, even though their milk was in and ready to go, breastfeeding proved challenging for many women due to their mobility limitations and chronic pain. Having a supportive partner or other formal or informal (social) supports seems to play a huge role in the transition to motherhood for physically disabled women, not surprisingly. I have learned so much from the women I have interviewed thus far. Their birth stories and experiences of parenting, particularly the creative and imaginative ways in which they parent, really evoke an interrogation of the (non-disabled) self, of what is “normal,” of what is accessible, and what independence looks like. Arguably, no one truly raises a child on their own.

I am thrilled to share that an article about my study will be featured in Transition in 2015. “Transition is a magazine for and about Canada’s families. Published four times per year by the Vanier Institute of the Family since 1970, Transition is widely read and well-respected by researchers, educators, students, journalists, family-service workers, doctors, lawyers, parents and many others interested in family issues. Accessible, thought-provoking and visually appealing, the magazine presents a balance of insightful views and timely information. Each issue features guest articles by North American experts on family life and the trends and policies affecting Canadian families today.”

Dr. Lisa I. Iezzoni and colleagues in the U.S. have recently published the first of what I imagine to many papers from their qualitative study of physically disabled women’s experiences of the perinatal period in Acta Obstetricia et Gynecologica Scandinavica. Check out the abstract for that paper here. I look forward to reading this paper and others by Dr. Iezzoni, who I was fortunate enough to meet when I was in Boston in November. She really is a pioneer in research on the health care experiences and outcomes of persons with disabilities in the U.S. Click here and here to learn more about Dr. Iezzoni and her work.

Update #3 – February 17, 2015 

I have completed interviews with 8 women and I will be interviewing my 9th participant later this week. Due to some challenges with recruitment I have expanded the geographical inclusion criteria for my study from the Greater Toronto Area to Southwestern Ontario. Please see my new and improved recruitment flyer (thanks Ryan Nunn!) and help spread the word! Thank you!

recruitment flyer

Update #4 – February 19, 2015

I am happy to report that I interviewed my 9th study participant today! Already, as mentioned, despite their varying disability types, backgrounds, and experiences, I have identified a number of common themes among my study participants, including barriers to care and assumptions and negative reactions from strangers. But here, instead of dwelling on the (many) things that can be improved to enhance care experiences and educate the public, I want to stress how thankful I am to the women who have participated in my study thus far. I am taken aback with how generous you have been—you have taken time out of your busy days to talk with me, you have invited me into your homes, and you have shared very intimate details of incredibly significant moments of your lives with me. I don’t think I will ever get tired of listening to birth stories! I feel extremely grateful that I get to do this work and really hope that in a year or so, when all of the interviews are complete and the data is analyzed, that I can produce materials that you are proud of and that make a real difference so that more people can learn about your experiences and we can work to address barriers to care and other issues we’ve identified that need addressing.

Unfortunately, it has been more challenging than anticipated to find eligible study participants, and so it was decided at my last dissertation committee meeting to expand the geographic criteria of my study from the Greater Toronto Area to Southwestern Ontario more broadly; in other words, participants are welcome from the following areas:

  • Markham, Newmarket, Richmond Hill, Vaughan (York region)
  • Oshawa, Whitby, Ajax, Pickering (Durham region)
  • Scarborough, Toronto, North York, Etobicoke (Toronto region)
  • Mississauga, Brampton (Peel region)
  • Oakville, Burlington, Milton, Halton Hills (Halton region)
  • Hamilton–Wentworth
  • St. Catherines, Niagara Falls (Niagara region)
  • Guelph
  • Kitchener, Waterloo, Cambridge (Waterloo region)
  • Stratford
  • London (furthest west)

Recently, I met with staff at two organizations in Toronto who offer programs and services for disabled women who were kind enough to tell me more about the work that they do and to spread the word about my study – thanks Lucy (from the Anne Johnston Health Station), and Andrea and Melanie (from the Centre for Independent Living in Toronto)!

Here are some resources for disabled women in Toronto that may be relevant to you (e.g., if you need information about attendant care and/or nurturing assistance, adaptive devices/equipment, connecting with other parents with disabilities, etc.):

In Toronto next weekend? If so, I encourage you to attend Intermingling Disability Communities: Reclaiming Our Bodies & Minds Conference 2015, a three-day conference jointly organized by groups at George Brown College, York University, Ryerson University, and the University of Toronto. In the evening, on Saturday, February 28th there will be a panel focused on how individuals with developmental disabilities experience parenting.

Want to share your birth experience? Tired of birth horror stories? Want to learn more about midwifery? I encourage you to check out the Positive Birth Collective, an inclusive non-judgmental (online) space created by my good friend Michelle for women and birth partners to come together and share their journeys through pregnancy and birth using various mediums such as storytelling, art, and poetry.

Finally, thank you, again, to all of the women who have participated in my study thus far and to those of you who have helped spread the word about my study! I look forward to sharing more with you as the study progresses!

Update #5 – February 20, 2015

My committee member Karen Yoshida sent me an article the other day about mothering while disabled. In this article, the author, Angela Frederick, shares some cases of disabled parents losing custody of their children. The fear and worry of constantly being judged and having to prove one’s self as a parent has been mentioned by many of my study participants, particularly as they have reflected on a recent case in the GTA in which two parents with cerebral palsy almost had their child taken away by the Children’s Aid Society. Here are a few articles about that case:

Vince Talotta / Toronto Star

Photo by Vince Talotta / Toronto Star of Maricyl Palisoc and Charles Wilton holding their son William

“…parents’ disability status is a poor predictor of child maltreatment.” – A. Frederick

Finally, here is an update on what is happening in the U.S. regarding the rights of disabled parents:

“…for the first time in U.S. history the federal government has recognized in the course of an investigation that the Americans with Disabilities Act (ADA) applies to parents with disabilities involved in cases with state child welfare/dependency systems.” Through the Looking Glass

Update #6 – February 25, 2015

I am happy to report that I will be presenting preliminary study findings at the American Psychological Association Convention (in August) and the Association of Ontario Midwives Conference (in May)!

I am also happy to report that there are researchers in other parts of the world doing work very similar to mine. Of note (as aforementioned) is a study by Iezzoni and colleagues in the U.S. as well as a recently published study by Lawler, Begley, and Lalor in Ireland. I look forward to reading these papers and reflecting on how the experiences of mothers with physical and mobility-limiting disabilities in Ontario compare and contrast to those in other countries. 

Finally, I invite you to tune in at 3 pm on Wednesday, March 25th to my Health Care, Technology, and Place (HCTP) seminar. Funded by the Canadian Institutes of Health Research, HCTP is a strategic research and training initiative based at the University of Toronto that I am a part of. For my seminar, I will be providing an overview of my study to-date.

Update #7 – April 8, 2015

Today I was honoured to participate in a focus group of service providers for a project about reproductive health and parenting among women with disabilities and Deaf women led by Springtide Resources and the Centre for Independent Living in Toronto (CILT). Funded by the City of Toronto’s Access, Equity and Human Rights Investment Program, for this project Springtide and CILT are talking to service providers and moms and prospective moms with disabilities to learn about their experiences accessing services, what services are available, and what is not available in Toronto to develop resources and best practice guidelines. This project is very much related to the Strength-Based Parenting Initiative (SPIN).

There will be a launch of the project findings and a chance to network on May 22, 2015 (more details to come). If you are a service provider interested in participating in this project or want more information about SPIN, I encourage you to contact melanie.moore@cilt.ca

Finally, I am still looking for study participants so please continue to spread the word and keep in touch 🙂

Update #8 – April 15, 2015

So this update isn’t totally related to my study but I wanted to share an intriguing story and beautiful photos that I came across online today about a woman in the U.S. who initially planned to have a home water birth with a midwife but later, while she was on her way to have a c-section, ended up having her daughter vaginally, as she came out breech on the operating table.

Update #9 – May 1, 2015

I am happy to report that I am almost done transcribing the 9 interviews I have conducted for my study thus far and am looking forward to presenting some of preliminary analysis of findings next week at the AOM Conference (May 6th) and at the Women’s College Hospital Women’s Xchange Spring Event (May 8th).

In addition to this study, I also do work in the area of LGBTQ health, including some work on LGBTQ people’s experiences accessing services to become parents. This afternoon I saw a really beautiful documentary called Gayby Baby exploring the lives of children who have queer parents. I encourage you to watch this film. This film and my research remind me of how diverse families can be – and increasingly are – in our world today and how important it is to celebrate families in all of their configurations. We can learn a lot from families that are different from our (biological) families of origin.

It has been more difficult than anticipated to find study participants in the GTA so my study has now been expanded to all of Ontario – please help spread the word! Thank you and have a great weekend 🙂

Update #10 – May 8, 2015

I had a great time presenting my research this week at the AOM Conference and the Women’s Xchange Spring Event! It was great to connect with some new and old faces, learn what others are working on, and to receive positive feedback on my work. I have lots more to share today but I am running low on energy so here are a few updates:

– The Spinal Cord Injury Perinatal Interest Group, based in Vancouver, has developed some resources for women with spinal cord injuries. Check them out here! I am also happy to report *fingers crossed* that some resources regarding disability, pregnancy, labour, and birth will be available on the Society of Obstetricians and Gynaecologists Canada (SOGC) website soon. This is long overdue, especially as the U.S. equivalent (ACOG) has a number of resources on their website.

– Sunday is Mother’s Day! Happy Mother’s Day to my silly, beautiful, awesome mom, to all of the incredible women who have mothered me over the years, to my lovely friends and family members, including my sister-in-law Lee-Anne, who are celebrating Mother’s Day for the first time, to all of the LBTQ moms I know and learn so much from in my life and work, like Rachel Epstein (who fought to make sure that non-birth are moms legally recognized), and to Karen Hodge (in this video) and the other mothers with physical disabilities that I have had the pleasure of interviewing for my study!

– Speaking of Mother’s Day, I encourage you to check out the Moms Issues of GUTS, a digital, volunteer-run Canadian feminist magazine and blog.

mom-body-p24

Illustration by Rebecca Roher, taken from the GUTS website

 

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