25% of Canadians live with a disability and 1 in 8 babies are born to mothers living with a disability, yet this comprehensive study outlines the unreadiness of Canada’ s Health System to address the specific issues women who live with disability, experience during their pregnancy. We are thankful to the US National Institute for Health for addressing this appalling state of affairs on such a crucial issue. Possibly in Canada we are too fond of talking about the issue but not focussing on how we can do better, and for women living with disabilities who are pregnant that “better” needs to begin right now!!! I have linked some efforts by our governments and human rights commissions and a book by Chris Kaposy that highlights a little of how we got here regarding Canadians living with intellectual and physical disabilities. However, from my pro-life perspective, I cannot help believe that the pre-implantation genetic testing and the large number of children aborted because of these same disabilities may have had a hand in hardening our hearts towards those who manage to be born.
“Conclusion: Data from the Disability and Pregnancy Study show that many people with disabilities in Ontario experience pregnancy. People with disabilities have a right to high-quality pregnancy care that is timely, accessible, respectful, family-centred and evidence-based. However, our health administrative data showed consistent health disparities for people with disabilities at every stage of the pregnancy journey, and our qualitative interview data identified a pregnancy care system that is inaccessible to many people with disabilities. These findings show that it is time for action, where data can come together with policy and clinical practice leaders as well as people with disabilities, to ensure that pregnancy care is in inclusive of and equitable for all people with disabilities.” Brown HK, Saeed G, Tarasoff LA, Proulx L, Welsh K, Fung K, Qureshi S, Guttmann A, Havercamp SM, Parish SL, Ray JG, Vigod SN, Lunsky Y. Toronto, ON: ICES; 2024.
“The scientists call for sweeping systemic change. “This is not a point-of-care type of fix,” Hilary says. Interviews with clinicians revealed they had little medical training related to disability and no resources to draw on. “When we know 25 per cent of the population has a disability and one in eight pregnancies are to people with a disability, that’s a huge oversight. We know there’s a lot of interest in equity, diversity and inclusion in medical schools, but so far it hasn’t covered an understanding of disability and ableism.”In order to beef up clinician education “we need the political will to make funding a priority,” Hilary says. Of note, the Equity and Inclusion in Pregnancy Care report was funded by the U.S. National Institutes of Health, which put out a specific call for research on this population. No similar call has been issued by a Canadian funder ( my emphasis). In order to change the system, “We also need better social policy and equity for people with disabilities more broadly, so we have people with disabilities in leadership in government and clinical care,” Hilary says.”
In his 2023 book “The Beautiful Unwanted: In myth, Memoir and Bioethics, Chris Kaposy poses some very good points as to why we have the attitude , we do as a society, to those living with intellectual and physical disability -possibly our Ministry of Health and Governments need to read some of his insights which, by the way do not hail from a pro-life perspective.
“My new book (published in October) The Beautiful Unwanted is about the predicted disappearance of people with Down syndrome from our communities. In the book I trace out some of the genealogy of the current state of reproductive decision-making – into recent history, and further back into myth. Our decisions are influenced, in part, by sedimented layers of cultural messaging about intellectual disability. These messages about Down syndrome, in particular, can be found in a whole prehistory of disappearance. This prehistory has played out in bioethical controversies. Baby Doe, who died because he was refused life-saving surgery, is an example. His death in 1982 persists in living memory. I am no Baba, and writing a book is no act of moral heroism. I do, however, appreciate the insight that we ought to have our own reasons for the things that we do – even when our goals are idealistic. I am not convinced by the prediction of the disappearance of Down syndrome. Regardless of the influence of the past, the future is another country over which we have some control. We can begin to tell new and different stories about Down syndrome. I wrote The Beautiful Unwanted to reassure myself that the future will be hospitable for my son Aaron, and to show that this imperfect world can disclose its beauty through a child”. https://www.mqup.ca/blog/introducing-beautiful-unwanted/
Chris Kaposy is an associate professor at the Memorial University Centre for Bioethics, and an editor of the Impact Ethics blog. On Mastodon: @ChrisKaposy@mindly.social
Changing Attitudes and Raising Awareness federal Government Survey
Canadian Huma Rights Commission Survey
Serious Problems Experienced by People with Disabilities Living in Atlantic Canada
https://www.justice.gc.ca/eng/rp-pr/jr/pwdac-phca/discussion.html
Ontario Human Rights Commission
https://www.ohrc.on.ca/en/policy-ableism-and-discrimination-based-disability/1-introduction
“It is an unfortunate truth that the history of disabled persons in Canada is largely one of exclusion and marginalization. Persons with disabilities have too often been excluded from the labour force, denied access to opportunities for social interaction and advancement, subjected to invidious stereotyping and relegated to institutions… This historical disadvantage has to a great extent been shaped and perpetuated by the notion that disability is an abnormality or flaw…[People with disabilities]… have been subjected to paternalistic attitudes of pity and charity, and their entrance into the social mainstream has been conditional upon their emulation of able-bodied norms…[ Eldridge v. British Columbia (Attorney General), [1997] 3 SCR 624, 1997 CanLII 327 (SCC) [Eldridge] at para. 56.
