March 2023 | Issue 2
Three new Disability and Pregnancy resources are now available to support healthcare providers, administrators and pregnant people with disabilities. Over the last year, PCMCH collaborated with Dr. Hilary Brown, Dr. Yona Lunsky, Dr. Lesley Tarasoff and their team from the University of Toronto to develop evidence-based resources that support healthy pregnancies, birthing experiences and postpartum outcomes for people with disabilities. Each resource contains information about disparities people with disabilities can experience that impact access to healthcare and pregnancy outcomes. They also include recommendations for healthcare providers and administrators about how to address such disparities and provide advice for Ontario’s birthing parents with disabilities about how to access perinatal and postpartum care.
PCMCH spoke with Dr. Brown, an Assistant Professor and Tier 2 Canada Research Chair in Disability and Reproductive Health at the University of Toronto, and Laurie Proulx, a co-researcher and co-author of the resources, and a parent living with a disability. Here, they discuss the need for resources specifically for pregnant people with disabilities, the development of the resources, and their experiences as a care provider and a disabled care recipient within the perinatal healthcare system.
How great is the need for pregnancy planning and birthing resources for people with disabilities in Ontario?
Dr. Hilary Brown (HB): There is a huge need. Our data show that one in eight pregnancies in Ontario are to people with a physical, sensory or developmental disability. And yet, there are very few pregnancy-related resources created with the needs of people with disabilities in mind. Pregnant and postpartum people with disabilities frequently report considerable frustration trying to navigate the obstetrical care system and find information tailored to them.
Laurie Proulx (LP): As a disabled mom of two children, I felt quite lost during my pregnancies. There is a certain image and expectation of parenthood and I never felt like I fit in. I tried to find educational resources, but I could barely find any information. This led me to develop resources for people with rheumatic diseases as they navigate sexual and reproductive health. It was also quite difficult to navigate healthcare. I never quite felt like my “whole self’ was treated as I was followed independently by rheumatology and high-risk obstetrics.
What is the significance of referring to “people with disabilities” as well as “disabled people” within the resources?
HB: People with disabilities have different preferences about the language they use to describe themselves and these preferences may also change over time. Person-first language (e.g., “person with a disability”) focuses on the individual rather than their disability. This approach attempts to remove the disability as the defining characteristic of a person and sees it as one of many characteristics. Person-first language was a response to societal assumptions and perceptions that dehumanized people with disabilities. On the other hand, identity-first language (e.g., “disabled person”) emphasizes an individual’s disability. Identity-first language evolved to allow disabled people to reclaim their power and possession of disability as a positive social identity. We use both person-first and identity-first language to acknowledge the diverse ways in which people speak about their disability.
LB: My experience in identifying with and belonging to the disability community evolved over time. As a teenager and into my mid-20s, I tried to ‘overcome’ the obstacles placed before me by healthcare, schools, workplaces and social roles. The emphasis for me was on ‘fitting in’ and being able to do the things I wanted to do in life. But, as I became involved in a disability group called the Canadian Arthritis Patient Alliance, I realized that I didn’t have to live with these obstacles and could work to remove the barriers to quality healthcare and more. For these reasons, I identify myself as “disabled” because it’s the world around me that is disabling me, not my physical, mobility and cognitive challenges.
Several challenges faced by pregnant people with disabilities are identified in the resources. What is the most significant that was raised repeatedly by both providers and participants with lived experience in the work groups?
HB: One that stands out as the most actionable is obstetrical care providers’ lack of education and resources related to disability. Many providers we talked to noted that they never received any training related to disability, and any knowledge they had was due to their own efforts in seeking out additional resources. At the same time, pregnant and postpartum people with disabilities frequently felt frustrated when they asked their providers for information on how their disability might impact their pregnancy (and how pregnancy might impact their disability) and were told “I don’t know”. There is clearly a gap in data, guidelines and provider training and resources that needs to be addressed.
LP: What strikes me most is the negative and stigmatizing healthcare provider attitudes. Well before I was considering pregnancy, a physician told me that “I would need a strong partner” if I wanted to have children. It made me doubt my abilities to be a parent. Further healthcare experiences emphasized what complications and risks might happen to me and my child if I were to become pregnant. The lack of balance in the information provided to me really had a negative impact on my confidence. I also think that so many people with disabilities noted they had to “advocate” for the care they needed. While I am a strong supporter of self-advocacy, healthcare providers also need to listen to and acknowledge the perspectives of disabled people. If not, people with disabilities can advocate and advocate but without concrete change or results. These experiences can be traumatizing and render people and the disability community powerless.
Laurie, what was the biggest challenge you faced as a person with lived experience of disability and pregnancy?
LP: When I was pregnant with my second child, I was quite ill in the third trimester and was admitted to hospital three times. A lot of my medications were not compatible with pregnancy, so I had to change many of them to medications that didn’t control my juvenile idiopathic arthritis and rheumatoid arthritis. This meant health issues that were previously well controlled with medications returned with a vengeance. The care models at the hospital and in the community were just not sufficient to meet my needs. I was being cared for by two or three specialities in hospital and one in the community and the healthcare providers never seemed to speak with each other. I advocated for myself even though I was seriously ill, but I still almost died. My child was born through an emergency caesarean section and wasn’t breathing at birth, and I was admitted to the Intensive Care Unit. I had a second emergency surgery for a tracheostomy the day after my child was born and the tracheostomy remained for two months.
I feel immense gratitude for the healthcare providers who saved my life when I crashed. I think my personal experience highlights how different parts of the healthcare system – medication, regulation, hospital care, community care, etc. – didn’t work well together in preventing serious health crises. Being able to continue taking my medications during pregnancy could have prevented this whole ordeal. Once the issues presented, though, different specialists were unable to pull together to address my healthcare and the core problems. Greater collaboration among healthcare providers might have made the difference or, perhaps, a different model of care is needed for people with disabilities.
How do you think your healthcare needs could have been approached differently?
LP: When reflecting on the birth of my second child, my biggest wish is that someone involved in my care had called my rheumatologist. He was my advocate and avid supporter for over 10 years before pregnancy. He supported me in getting pregnant, even when I had several miscarriages, and guided me along the way through flares, changes in treatment and accessing other healthcare services. Care providers need to build on these already amazing supports (if they exist) for the disabled person.
Why was it important that people like Laurie, who have lived experience, participate in the resource development?
HB: Involving people with disabilities in the collection of data, interpretation of findings and creation of these resources is critical as it is in keeping with the disability community’s call for “nothing about us without us”. A message we consistently heard from people with disabilities on our team was the importance of emphasizing that most people with disabilities have healthy pregnancies, and that the complications that might arise are often driven by structural and social barriers to care, such as poverty and inaccessible healthcare environments. These reminders are important if we are to avoid over-medicalizing the experiences of people with disabilities in pregnancy and postpartum. The resources we created aim to provide balanced information that stems from existing research and points toward changes in care provision that might have a positive impact on people’s outcomes and experiences.
LB: There is community-specific knowledge, history and perspectives that are critical to informing research. Often “ableism” dominates our societal culture – we are seen as “less than” by many and this bias can affect how research evidence is created and disseminated and, therefore, used in clinical practice. It is an incredible strength of Dr. Brown’s work that she has involved the disability community in all aspects of her research, and I can only hope that this inclusive approach will have significant impacts on the care of disabled people during pregnancy and birth.
What is something that care providers could address in their own practices now that would enhance the quality of care they’re providing to pregnant people with disabilities?
HB: We heard often from participants and our advisory committee that people with disabilities are experts in their own care, so ask them what works for them. We heard many stories of providers making assumptions about the nature of participants’ disabilities and what they might need (e.g., related to mobility and communication). Although providers certainly need to ensure that required accommodations are in place, participants’ positive pregnancy experiences often started with providers asking them specific questions about their disability-related and other needs, with care plans taking a patient-centred approach.
LP: Pregnancy is one step in a life-long journey of disability, so healthcare providers should consider building quality relationships with people with disabilities in their practice. I know some would argue that this is difficult with the short appointment times and care models we have, but building trusting relationships is at the centre of effective healthcare delivery. When I think of my best interactions with healthcare providers, they have listened to and acknowledged my concerns, know and understand my preferences, and provide options that align with my needs. Establishing rapport and relationships with patients also means they get to know you, too – you become more than just a healthcare provider if you let people in.