Proceeding of the Standing Senate Committee on
Human Rights
Issue No. 42 - Evidence - Meeting of May 15, 2019
OTTAWA, Wednesday, May 15, 2019
The Standing Senate Committee on Human Rights met this day at 11:30 a.m. to examine and monitor issues relating to human rights and, inter alia, to review the machinery of government dealing with Canada’s international and national human rights obligations (topic: forced and coerced sterilization of persons in Canada).
Senator Wanda Elaine Thomas Bernard (Chair) in the chair.
[English]
The Chair: I would like to begin by acknowledging, for the sake of reconciliation, that we are meeting on the unceded, traditional lands of the Algonquin peoples.
I’m Wanda Thomas Bernard, senator from Nova Scotia, and I have the honour and privilege to be the chair of this committee. I now invite my fellow senators to introduce themselves, starting on my right.
Senator Cordy: Jane Cordy, senator from Nova Scotia. Welcome to our committee this morning.
Senator Wells: David Wells from Newfoundland and Labrador.
[Translation]
Senator Cormier: René Cormier from New Brunswick.
[English]
Senator Boyer: Yvonne Boyer, Ontario.
The Chair: Today, under the committee’s general order of reference, we are studying the forced and coerced sterilization of persons in Canada. While the forced sterilization of Indigenous women has recently received significant public attention, it has come to the committee’s attention that non-Indigenous women belonging to marginalized or vulnerable groups may have also been subjected to forced sterilization.
With limited time before the end of the Forty-second Parliament, our committee is conducting a preliminary study to investigate the scope of the problem. We expect to release a short report with recommendations for further study.
Let me introduce the witnesses for the first panel. Bonnie Brayton, National Executive Director, DisAbled Women’s Network of Canada; Dr. Morgan Holmes, representing Egale Canada. She is a professor at Wilfrid Laurier University and intersex secretary of the ILGA North America. We have Julie Harris, President and Principal of Contentworks Inc.; and, just arriving, Dr. Josephine Etowa, who has left her teaching responsibilities this morning at the University of Ottawa to join us. That’s the reason she’s a bit late. She’s a professor in the Faculty of Health Sciences at the University of Ottawa.
Each of our witnesses has been asked to make a five-minute opening statement, and then we shall have questions from the senators.
Ms. Brayton, you have the floor.
Bonnie Brayton, National Executive Director, DisAbled Women’s Network of Canada: I’d like to say a special thanks to Senator Boyer, who reached out to DAWN Canada to seek additional information on the issue as it relates to women and girls with disabilities.
Good morning. I’d like to acknowledge the unceded Algonquin territory and our presence on their lands today, and the fact that we are in a time of truth and reconciliation, so let us also consider particularly the needs of our Indigenous sisters today and how we can make reparations, and make their lives better now and for their future generations.
Race, disability and sterilization is the first intersection I would like to address, which is based on DAWN Canada’s most recent research report released on International Women’s Day called More Than A Footnote: A Research Report on Women and Girls with Disabilities in Canada. Again, it’s available through DAWN Canada’s website.
Before beginning, it is important to note that the issue of forced sterilization is deeply rooted in both ableism and racism. The eugenics movement, both in the United States and Canada, was linked to White supremacist ideas around the degeneration of the White race. In Professor Anna Stubblefield’s work on “Whiteness,” disability and eugenics, she argues that the concept of feeble-mindedness of relevance in terms of women with intellectual disabilities, certainly not a term we support, is itself rooted in a racialized conceptualization of intelligence. White individuals are framed as the norm in terms of cognitive capacity, and persons of colour are seen as having inferior intellectual capacity. So feeble-mindedness was linked to “tainted Whiteness.”
This concept was also heavily gendered. Women were more likely to be seen as morally depraved and promiscuous, evidenced by their higher rates of diagnosis,institutionalization and sterilization. This research also notes that the practice of sterilization linked to feeble-mindedness was not just practised on Whites. In the 1960s and 1970s, more widespread coercive sterilization of Black, Puerto Rican, Mexican and American Indian women took place. In examining the issues of forced sterilization, we need to have an intersectional analysis.
Women with disabilities in Canada have been targeted for coercion and/or forced sterilization historically and remain vulnerable to these practices today.
Canada was influenced by the eugenics movement through the 20th century. Both Alberta and British Columbia had legislation and labelling sterilization for those diagnosed as mentally ill and deficient. Data from the Alberta Eugenics Board case files indicate 1,154 women with disabilities were sterilized under the eugenic practices.
The Chair: Excuse me, Ms. Brayton. You’re going a bit too fast for translation.
Ms. Brayton: It’s because I thought I had seven minutes, and now you told me I have five. I’m sorry.
The Chair: You do have five. We have copies of your notes.
Ms. Brayton: Excellent. What I’ll do, because I can’t really measure how long that five minutes is going to be, is focus on some of the most important things I think we need to focus on.
The Supreme Court decision Eve is something mentioned in my speaking notes. The case involved a 24-year-old woman with an intellectual disability. The mother argued that as her daughter’s substitute decision maker, she wanted to be authorized to have her daughter undergo a tubal ligation. The Supreme Court ruled against the mother, saying the procedure was non-therapeutic.
This landmark decision was a critical turning point in the struggle for recognition of rights of persons with intellectual disabilities. It ended the long-standing practice of non‑therapeutic sterilization of people with intellectual and mental disabilities. It also affirmed that regardless of cognitive ability, all persons have fundamental human rights which cannot be overridden even when a person is in guardianship.
Parental influence continues to be a factor for young women with disabilities today because parents may still yield power and control that can influence access to and decisions around reproductive health. Indeed, in our research, we spoke to one woman with a disability who shared that her parents had made reproductive choices on her behalf, without her consent and against her will.
Another issue for women and girls with disabilities is the use of Depo-Provera. Depo-Provera remains controversial, and its side effects can be very serious and are not well understood. There is evidence that it was prescribed to women with disabilities before being approved as a contraception method in Canada. As well, one Canadian study found that young women with intellectual disabilities were commonly prescribed Depo-Provera in response to family and caregiver concerns around unwanted pregnancy and menstrual hygiene.
I want to place emphasis on the idea that it is not that women with disabilities are vulnerable; it is that we are “vulnerablized” by the situations we are placed in.
There are several factors which increase the vulnerability of women with disabilities to reproductive coercion and abortion, and these include limited contraception options and a lack of knowledge about disability from health care providers. These barriers are grounded in negative attitudes around sexual and reproductive rights for women with disabilities.
For those with intellectual disabilities, especially adolescents, parents and guardians may shy away from the topic of sexual health and/or ignorance altogether. This leads to individuals having very little control over related decision-making.
Our recommendations to the Senate at this point are that there are several ways to support women and girls with disabilities in accessing their sexual and reproductive rights, which include supporting self-advocacy for women and girls to become partners in their care, teaching health providers about disability to avoid ignorance and surprise that women with disabilities are sexually active and conducting more research and policy analyses to examine the many insidious ways that women with disabilities and their bodies are controlled by caregivers.
If I still have a moment left, I will share one other piece of information. One of the most disturbing things we came across was the practice of applying invasive growth attenuation treatments, commonly referred to as the “Ashley Treatment”, to children with complex disabilities and medical conditions, aimed at keeping them small, presumably to ease care considerations for their parents.
Procedures include things like high doses of estrogen, hysterectomies and breast-bud removal. While this seems most prevalent in the U.S. with some spread to other countries, it is difficult to gauge what is happening here in Canada.
The Chair: We will now hear from Dr. Holmes.
Morgan Holmes, Representative, Egale: Thank you to honourable senators for granting Egale and me the time to address the committee.
[Translation]
I would like to thank the honourable senators for the invitation to appear. I am very pleased to be here.
[English]
I have come to address the matter of human rights violations of intersex persons in Canada as this relates to the involuntary or coerced sterilization of members of this population.
I’m a professor trained in the sociology and anthropology of medicine, with a 25-year research record devoted to an issue that I’m going to try to encapsulate in a few brief moments.
Intersex is not an identity or a gender, but rather an umbrella term that refers to 17 different types of significant variation of biological sex differentiation. The medical community usually refers to these types in contemporary parlance as “disorders of sex development,” but those so labelled prefer not to be pathologized, so we use the still contemporary but somewhat older, more neutral clinical term “intersex.”
Of the 17 types, the 2 most frequent are CAH, congenital adrenal hyperplasia, in which the adrenal glands secrete a higher-than-usual level of androgen, which for female fetuses can have a masculinizing effect. The second most common is androgen insensitivity syndrome, AIS, in which case the body is chromosomally XY, but the testes, instead of producing testosterone, convert to estrogen and the appearance is typically female in the complete form.
However, AIS ranges from the complete form with this typical female appearance to the partial with the world’s most famous partial androgen insensitivity syndrome, or PAIS, woman being Caster Semenya. Semenya is not Canadian, but the conditions meted out to her recently will apply to women athletes like her in Canadian elite sport, and those conditions imposed include the coerced removal of gonads and/or the use of hormone-suppressing drugs. We’ve already heard some of what the hazards of these are.
The IAAF has already acknowledged that its ruling about these elite athletes is discriminatory, but claims it has no way to protect the regular, naturally inferior women from men who would otherwise masquerade in their sports. It is sexist at all levels, and it is a violation of human rights across the board.
It is the AIS group within intersex that to this day endures the routine removal of their testes as early as possible in childhood or even in infancy. Some hospitals in Canada are now willing to be more sparing in the preservation of the gonads, while others still recommend their removal upon discovery. Locale seems to determine practice rather than a unified standard of care that respects the bodies of those so interfered with.
Kyle Knight, a senior researcher with the Human Rights Watch in the United States explains as follows:
Surgery to remove gonads can amount to sterilization without the patient’s consent, and then require lifelong hormone replacement. . . .
The removal of gonads constitutes not only a sterilization but also threatens the bone health of those developing infants and children, leaving them vulnerable to severe osteoporosis at a young age and simultaneously forces them onto HRT, a regimen that increases their risk for developing a number of cancers over their lifetime.
In Canada, our current Criminal Code in section 268(3) bans female genital mutilation, while at the same time explicitly permits this damaging surgery as well as the attendant appearance and function-altering procedures that include things like the removal of clitoral and vulvar tissue, the alteration of the appearance and function of a small or hypospadic penis. The practices also can include the removal of small testes in men with Klinefelter syndrome and their replacement with larger prosthetic testes that serve no biological function whatsoever.
Of particular concern are Indigenous populations in northern Quebec and Labrador where there are concentrations of AIS, and youth are subject to paternalistic and invasive medical intervention that happens with fly-in groups.
Honourable members of the committee, we have repeatedly called for the removal of this damaging clause in the Criminal Code, a clause that is unique in the code for its protection of known perpetrators of these violent acts and human rights abuses of children. Our most recent communication on the subject, “65 Reasons,” lays out literally 65 reasons that the law should change. This was sent to the Honourable David Lametti, the Honourable Ginette Petitpas and the Honourable Randy Boissoneault, but aside from these few moments of your time, we’ve had no response to our position and no indication that intersex persons will be granted our most fundamental right to protection of our bodily, sexual and reproductive autonomy nor that we have any hope of seeing in our lifetime an acknowledgement and apology for having had our rights violated, our bodies mutilated and our voices discounted.
I hope that this meeting with you today will promote a swift prioritization to correct this terrible history, to alter our Criminal Code to protect intersex persons as any other person is protected from mutilating harm against their body and will work to remedy our future.
When he read it into the Hansard in October 2018, our Prime Minister acknowledged in the LGBTQ2 apology the work that remains to be done to remedy the abuses against intersex people in Canada. We seek your action to end the damage.
Julie Harris, President and Principal, Contentworks Inc.: Thank you very much for inviting me to speak today. My name is Julie Harris, and I’ve worked as a public historian since 1984 and worked on Inuit history since 2008. I was asked by Senator Boyer to look into the general topic of the history of sexual sterilizations of Inuit women across the North earlier this year and have completed a draft research paper that requires some fixing.
The paper outlines some of the most pertinent evidence from archival information, especially material in Library and Archives Canada, but I honestly believe that more useful information about sterilizations will be found through interviews with women who underwent procedures and with medical personnel who conducted them and were present at the time.
My work for Senator Boyer and my presence here today benefits from previous studies by Karen Stote and others, but I would also like to use this opportunity to demonstrate the links between the topic of sterilizations of Inuit women and the ongoing work of the Inuit-led Qikiqtani Truth Commission, known as the QTC, which is under the administration of the Qikiqtani Inuit Association, the QIA.
The QTC is a rare example of a comprehensive social justice inquiry led and funded by Indigenous organizations. It completed most of its work in 2010-11. For years, the Canadian government rejected Inuit calls for a public inquiry into colonial practices, including forced relocations and the killing of qimmit, sled dogs, that radically transformed the Inuit homeland and traditional ways of life, particularly in the period from 1950 to 1975. Instead of an inquiry, however, the government of the day and subsequent governments asked the RCMP to look into the allegations and report to Parliament. QIA and Makivik, its Quebec counterpart, were deeply disappointed in the government’s approach and the RCMP report which contradicted and rejected Inuit accounts of their history in favour of oral accounts by police officers.
For these reasons, QIA established an independent truth commission to gather its own account of what happened. During its three-year mandate, it amassed an authoritative collection of historical documentation that I supervised, and interviewed about 350 witnesses under the direction of Commissioner James Igloliorte and Madeleine Redfern during public hearings to uncover the truth about the period; a time of profound economic change.
I want to get back to the parallels that I see between the evidence about the sterilization of Inuit women and the findings of the QTC. The QTC found that the government failed in its obligations to Inuit. Bureaucratic incoherence, ignorance and parsimony perpetuated colonial practices that were inappropriate culturally, geographically and financially. Corners were cut whenever possible. Bureaucrats continuously changed rules and procedures on a whim; a staff person might be using one form one day and then choose to use no form the next. No one was keeping track. Few interpreters were trained, and fewer still found meaningful work over a long period of time.
The government and its institutions, including medical services, used the North as a training and testing ground. Examined archival evidence that I looked at suggested that medical graduate students were performing sterilizations without supervision, and that it was possible that they were using sterilizations as practice opportunities for their later careers in the South.
The whole topic of informed consent is not limited to health care in this period. Inuit had no access to decision makers, they had almost no say in the processes and policies imposed on them and they found that their methods of resistance were sometimes detrimental to themselves. One of the methods of resistance was to avoid health services when they needed them, because they were scared, reasonably, about possibly being evacuated and never seeing their families again. It’s hard for me.
I would add that Inuit culture and ways of life were whole before the government stepped into the North: colonial laws, policies and administration, fragmented cultural practices around adoption, parenting, marriages and birth. Women capable of having many children — just like women in Quebec and New Brunswick — were celebrated, not shamed or pitied when they had many children.
When I read through the archival record, one of the things that struck me the most was the reams of paper and time spent on consent forms. It reinforced for me that it really wasn’t about their consent forms and their discussion about consent forms in the historical record in the 1970s, especially after the CBC articles and programs. It was not about consent, but really it was about ways to protect the government from liability for inappropriate actions.
Doctors knew then, just as they know now, that consent requires a doctor and a patient to have an intimate relationship that is really an oral understanding about what is happening from the moment an option is presented to the moment when it’s too late to stop.
Last, I’ll mention the unwillingness on the part of government and Canadians to heed advice, as in the famous example of Dr. Bryce in 1907 about residential schools, to critically examine injustices caused, understand how injustices continued, and take action for the future is part of the whole history of forced sterilizations.
I’d like to thank you for the opportunity to speak. I am very honoured to be with this particular panel of speakers today. Thank you.
Josephine Etowa, Professor, University of Ottawa, as an individual: Thank you for the invitation to participate in this important discussion today. I am a professor of nursing and Loyer-DaSilva Research Chair in Public Health Nursing here at the University of Ottawa. I have worked in the Canadian health care system over the last 20 years, examining the health issues of people of African descent in various roles, both as a front-line clinician and as a researcher, including working with Dr. Bernard.
I’ll move directly to some of the issues. The practice of forced or coercive sterilizations has been documented in Canada, as my fellow panel members have pointed out. In Ontario, in Alberta and in B.C. Indigenous scholars have documented the existence of this practice with Indigenous people. They’ve revealed the many dimensions of these issues in this community.
Today I would like my contribution to extend this conversation to include women of African descent. These are issues that have come up in the research we have done in the past, but it is an issue that we have generally considered the elephant in the room that we haven’t been able to talk about. Forced sterilization has been that elephant in many conversations of Black Canadian women.
For me, this conversation began in the early 2000s. In 2002, during the implementation of a three-year Canadian Institutes of Health Research-funded study nicknamed Black Women on the Margins project which examined the health of African-Canadian women residing in southwest Nova Scotia: the Digby, Weymouth, Shelburne and Yarmouth area.
The research set out to investigate the health status, health care delivery and health service utilization among African-Canadians living in rural and remote areas of Nova Scotia and to evaluate the impact of social, economic, cultural and political barriers to health and health care. It was also to build capacity for Black people to engage in collaborative health research in that region.
We were surprised, during regular team meetings to analyze the data from that study, to hear the issue of hysterectomy continually coming up in the qualitative interviews involving 237 women. People were having hysterectomies. We heard from people who worked in those communities, community facilitators, for our research. They started adding their own personal stories. We could not understand the full scope of the many hysterectomies we were reading about in this study. They started telling us their personal stories of how women in their community, especially those with dark skin colour, every time they went to the doctor, even in their early 20s, hysterectomy was one of the answers to whatever problem they went to the doctor for. We pursued that case and tried to investigate it for them.
I was supervising Louise Adongo as a graduate student. She decided to investigate the issue further for her thesis related to a Masters in Applied Health Services Research. She wanted to examine the health outcomes of African-Nova Scotian women by postal code mapped against other adverse experiences affecting historic Black communities in the province: for example, the location of landfill sites across Nova Scotia and other social conditions using health records. The location of landfills was an issue that came up as well in that particular research.
All efforts to obtain ethical approval for this proposal was unsuccessful. At that time, we were told that no race or ethnicity identifiers in the data sets were available, and that engaging in such projects had the risk of tracking medical professionals as well as patients. So we did not get ethics approval. This graduate student was then forced to abandon that original thesis proposal. Instead, she resorted to a qualitative study of the experiences of seven Black women who had hysterectomies for non‑life‑threatening reasons in the Halifax Regional Municipality at that time. So we were looking at issues of fibroids, severe pain and dysfunctional bleeding.
In that study of the revised thesis, she found that the sociocultural context of Black women has a significant impact on how they experience a hysterectomy. Women did not fully understand the rationale behind the hysterectomy. She recommended further study in terms of examining the non‑clinical factors that influence how health care professionals advise women regarding hysterectomy.
Historically, forced sterilization has been associated with political motivations and economic interests nested within that broader structural racism, as we’ve heard here today. Hysterectomy is one of the top five surgeries performed but one of the least talked about in Canada. Over 40,000 Canadian women had hysterectomies during the period 2012-13, according to CIHI data.
In 2014, the Toronto Star featured a story titled: Canada’s high hysterectomy rate under scrutiny. This included the story of Mercy Okalowe, a 26-year-old Black woman and public relations consultant who went against her health professionals’ advice to have a hysterectomy for treatment of fibroids. She successfully treated her condition with other measures that left her uterus intact.
In contrast to Mercy’s case, many of the women in our “On the Margins” project and the graduate student’s thesis do not feel empowered enough to assert themselves to go against the advice of their medical professionals. One of our key findings is that they had limited access to information and other resources necessary to challenge the provider’s advice and decisions. They are even afraid to advocate for themselves. They do not want to make waves because they are already seen as people who have problems, who are on welfare and all the other stereotypes that go with being Black and being a woman.
The issue of sterilization, especially in rural areas of provinces like Nova Scotia, remains the elephant in the room that people are too afraid to confront.
More recently, the issue resurfaced during the Health Association of African Canadians consultation meeting to expand its Black brotherhood program to include a Black sisterhood counterpart.
The organization, currently led by Sharon Davis-Murdoch, is exploring opportunities to mobilize resources to examine the high rates of hysterectomies in the Black community in Nova Scotia within the larger context of the social determinants of health.
We know that although people of African descent living in Nova Scotia come from diverse backgrounds, they share a common history: a history framed by a legacy of slavery and marginalization from the mainstream. Conditions of structural racism, discrimination, injustice and exclusion continue to exist in Nova Scotia to the present day. The lifelong exposure to racism has significant impact on the health and well-being of African Canadians. We know that inequities in health and access to health care are linked to differences in one’s social, economic, cultural and political situation.
The Chair: Dr. Etowa, I hate to interrupt you, but you are over the allotted time. I wonder if you could quickly give the summary points so we have those on the record. Then we will go to senators’ questions.
Ms. Etowa: I was about to read a quote from one of the women about poverty, but I will move on.
In summary, the quick points I’d like to make are that the current dialogue on forced sterilization needs to include a critical investigation of the issue among women of African descent, especially those in Atlantic Canada where no such study has been carried out, and the topic is too sensitive to be addressed. I would also situate that within the intersectional lens that my colleagues have talked about, because we can’t talk about this issue without talking about all the other issues of oppression that influence the decision-making and information available to these women to actually address this issue.
Last, I would also like to point out that a hysterectomy may be the best option for some health conditions, but other measures need to be explored first. Thank you.
The Chair: Thank you. Now we will go to senators’ questions.
Three senators have joined us since we did the intros, so I will ask them to introduce themselves.
Senator Ataullahjan: Senator Salma Ataullahjan from Toronto, Ontario.
Senator Ngo: Senator Thanh Hai Ngo from Ontario.
Senator Pate: Kim Pate, Ontario.
The Chair: Thank you. We will go to questions now.
Senator Ataullahjan: Thank you all for coming and presenting before us this morning. I was at a social event on Saturday, and I brought up the topic of forced sterilization. Nobody in that room realized that it is something that’s ongoing. It surprised me that the vast majority of Canadians are not aware that this is an issue and a problem that needs to be addressed.
Ms. Holmes, you said something that resonated with me. You seek help from the government to end the damage. What role has the federal government played? Have they responded to your concerns? This is an ongoing problem. What role would you like to see them play?
Ms. Holmes: Thank you for your question, senator. The response has been positive in terms of emotional interest statement terms: “We care a lot,” the word “intersex” was read into Hansard, as I mentioned, during the apology, but since then we’ve fallen by the wayside. The interest wanes.
We are not visible people — we walk among you — and because we are not visible, it is very easy to ignore the issue. I sit as a collaborator on a SSHRC-funded grant at the Centre of Genomics and Policy at McGill University. In addition to seeking the repeal of this section of the Criminal Code, which I think is the most important single step that could be taken, we are very concerned that we are moving past the sterilization of already-existing intersex persons and to the wholesale eugenic elimination of those who can be prenatally identified. For the CAH, AIS, Klinefelter and the Turner groups, our preliminary estimates show that 80 to 90 per cent are being terminated prenatally. These are not conditions that would warrant that kind of intervention. These are terminations happening for socially normative reasons and to allay parental distress over having an atypical child. Attention needs to be paid to that.
One of the points of resistance that we encounter is a view that repealing section 268(3) of the Criminal Code would be an interference with the privacy of families and parental rights of decision-making. Our response, as communities around the world, from the UN Commission on Human Rights report on torture report, to the independent human rights reporter, the various organizations globally, is that the current circumstance is already an interference into parental rights and decision-making. The medical establishment is setting up a situation that frightens the parents, coerces their proxy consent, damages relationships of parents to children and denies them the opportunity to have healthier choices made over a longer period of temporal consideration that allows for the child’s developing autonomy to come into play and give their own consent.
So, in fact, the repeal would protect families rather than harm them. Thank you.
Senator Cordy: I want to thank Senator Boyer for bringing this issue to the Senate and this committee. I was one of the people who thought this happened in 1960s and 1970s, but we’ve heard witnesses who say it happens today. Thank you for sharing with the committee issues related to studies you have done and the groups of people you work with.
Ms. Harris, you spoke of nobody keeping track of sterilization happening in the 1960s and 1970s. Are we keeping track of forced sterilization in 2019?
That leads to my question for Dr. Etowa. Being from Nova Scotia, I was interested in the study you have done. Our chair spoke about pockets of Black populations in neighbourhoods where high percentages of Black women have undergone hysterectomies. I was curious, when the studies were being done and you were speaking to these women, if somebody had asked them individually if they had undergone forced sterilization, would they have said “yes” or would they have said “no”? Was it only in talking to other people in their community that they recognized that a whole lot of people in the community had been sterilized, effectively, by having a hysterectomy?
Ms. Etowa: When we completed the study in the mid-2000s, “forced sterilization” were not the words women used. They just talked about having a hysterectomy and having their womb removed. They talked about it without necessarily saying, “I don’t know why so many of us had it.” If you look around in our community, many of us who had it are those with darker skin. So you may be a Black woman, but if you have lighter skin the chance of it being recommended is less. More women with darker skin had it and did not call it forced sterilization.
Are we documenting it today? Hysterectomies are generally documented in medical records. Do we have the race variable to be able to identify these? I think we still don’t have that in Nova Scotia. We are still trying to get race data, even in Nova Scotia.
Senator Cordy: Ms. Harris, are you seeing it? I know you’ve done it from a historical perspective.
Ms. Harris: I have done it from a historical point of view. I would have to go back, but I recall that Canada does not keep very good comprehensive statistics on all forms of birth control. That’s what I recall, but maybe somebody here now or possibly the later panel could answer that more efficiently than I can.
Senator Cordy: In light of your response, Dr. Etowa, if people didn’t know it was forced sterilization, they wouldn’t be included on a list anyway. So would you say that the numbers we see would be much lower than what is actually happening?
Ms. Etowa: I would imagine, because they didn’t call it forced sterilization. They just knew they had a hysterectomy.
Senator Cordy: Ms. Brayton, first of all, I don’t know what Depo-Provera is. I am assuming it is a form of birth control, but could you explain it to me?
Ms. Brayton: I will not be able to explain it fully because I am not a pharmacologist, but it is used as a form of contraception. There is a deal of questioning around the use of Depo-Provera, and the coerced use of Depo-Provera is the key issue here. There are many indications. Depo-Provera is not something that you will have prescribed if you go into your gynecologist’s office; it is typically something used in specific circumstances.
Again, women in prisons, in institutions and women who have much less bodily autonomy are being, if you will, forced into another form of sterilization. Again, it is the long-term effects of Depo-Provera that cause concern.
Senator Cordy: In your recommendations you spoke about supporting women and girls with disabilities and supporting self‑advocacy. If someone with a disability goes to see their doctor or to the hospital, do they have advocates available to them, or is it only if they bring an advocate with them?
Ms. Brayton: I’m glad you brought this up. I would like to say to the committee that it would be important to look at the work of the Canadian Association for Community Living and People First of Canada around legal capacity.
What is at issue here for women with intellectual disabilities is legal capacity. The reason I brought up the Eve case is because this is a very strong example of the legal capacity of a person with an intellectual disability being taken from them. I would say that, in terms of this issue, and the issue of women and girls with intellectual disabilities in particular, that we need to understand — and I would say other women and girls with disabilities — that the view of women with disabilities and girls with disabilities as nonsexual beings has had a huge impact on their access to information about their sexual and reproductive rights.
If I have an opportunity later on, one of the questions I would like to talk about is something promising not happening here in Canada but at the international level around bringing sexual and reproductive rights into an intersectional framework for all women and girls. This is what is missing at this point in terms of all the panellists you have heard from. The understanding, as everyone has pointed out already, in terms of who is being affected by forced sterilization is not well understood even within the sexual and reproductive rights community at this point.
Senator Cordy: Thank you.
[Translation]
Senator Cormier: My question will be in French and will be for Ms. Holmes.
Thank you for enlightening us about discrimination faced by intersex people. I don’t think Canadians know about it because this population isn’t visible.
I have before me subsection 268(3) of the Criminal Code and, without reading the whole thing, I see that operations on sexual appearance are permitted, and it also states that such action is acceptable in cases where a person is at least 18 years of age and there is no resulting bodily harm.
Do we have data in Canada that allows us to determine the main reasons for these operations? My sub-question is as follows: Since you are an invisible population, what is the psychological support surrounding the reality of intersex people? In addition, how long have you been asking the current federal government to amend the Criminal Code?
Ms. Holmes: Thank you for your question. I’ll answer in English because it’s easier for me.
[English]
You are asking what the history is for the creation of this law and the rationale for the development of the surgeries and how to intervene?
Senator Cormier: When we look at section 268(3), the reasons that are given to be able to make those operations —
Ms. Holmes: Where did they come from?
Senator Cormier: Do we have data around that? Do we know what type of operations?
Ms. Holmes: I love your question. I have a funded grant right now to try to determine those numbers. All I want to read are the redacted records, without any identifying information, of discharge notes. For 25 years we’ve had hospitals and individual surgeons saying, “We used to do that; we don’t do that anymore.” Successive young generations come up and say, “It just happened to me.”
On the weekend, I was working with a young woman who is 17 years old and has been fighting for 8 years to keep her testes. The hospital where she was diagnosed immediately recommended the removal of the testes, but the parents withdrew her from there and moved her to a different centre where they had a massive shift in who was on their clinical staff. They took a more subtle approach, but there was still constant pressure. This is a perpetual problem.
If they say they are not doing it, why do we continue to have people come forward, successively, who say it happened? We have no reliable numbers. There are no billing codes in our provincial health care to track those numbers. There is hypospadias surgery. That’s the only thing we have a billing code for. Nobody bills for a clitorectomy, for the removal of the testes or a resection of colon to create a neovagina in an infant. They are doing it some other way.
I wanted every single discharge record for the departments of urology and gynecology from a research hospital. The very same rationale that you encountered, “Oh, this could be dangerous to the surgeons,” was given. I took it to the privacy commission of the province, and they said that there is no public interest in this. My request for access to the files was denied. Health Canada and Public Health Canada are frustrated. They want the numbers as well.
To go back to the senator’s earlier question, are people interested? Yes. But is there the will to do much about it? It’s hard to say. This is the first real will I am seeing is in this room.
You had a second attendant kind of question about how this law was created. Really, it was a problem. Nobody knows exactly when it went into the code. The Privy Council Office tried to find out for me and was unable to determine that. We know it arrived in the late 1990s at roughly the same time it entered into the American federal law, which was brought forward by a congressman in Colorado in 1997. So roughly the same time.
The issue was specifically because this law was created around FGM, and the medical associations came forward and said, “Oh, no, you can’t just have a law about that. Because, if you do, we are going to go to jail and we can’t have that.”
This is a unique law, like I said, that protects the perpetrator rather than the victim. That is the rationale. I understand — I have some background in tort — that every single medical intervention is technically an assault. Usually, this set of situations excepted, we are brought into a rational conversation post Reibl v. Hughes about demonstrating our capacity to understand the implications, weigh the risks and make the decisions for ourselves, but this is denied to intersex infants and children.
Senator Boyer: Thank you all of you for coming today and sharing your stories. It is heart-wrenching to hear about them, and I realize that this is just a touch of what needs to be opened. I want to acknowledge the people who are watching and are also feeling the same way.
I have a general question for all of you that I would like each one of you to respond to. Should this committee decide to study the issues further, what aspects do we need to look at? Is it important to hear from the people who have been directly affected first-hand? I would like you to comment on that. Are there any gaps in the current literature that we need to be aware of?
Ms. Harris: I have been thinking about this in terms of Indigenous women and the impacts on them. If it’s broadened, my answer would change a bit.
One of the great advantages of the QTC project was that it was Indigenous-led. People felt comfortable. It is absolutely critical, in my opinion, to hear from and receive testimony from the people affected and involved. Some of the best and most useful testimony we received for the QTC was from a former social worker who talked very openly about what he did in the past and how he would do things differently today.
In addition to that, all the personal stories we heard were so important as oral histories. In terms of gaps, I would say that is also where the gap is, but I’m rethinking a lot of my assumptions about this based on the panel today.
Ms. Brayton: I will say that one of the things I don’t feel I spent any time on — and into which I am glad some of the other panellists have delved — is the reality that many women with physical disabilities are completely discouraged from bearing children or becoming mothers. While that is not a form of forced sterilization, it has the same net effect. In my case, after my second child, I was discouraged by my doctor from considering a third child and encouraged to have an abortion.
This brings me to something important if we look forward at this issue. Something that’s very promising and recent in the context of women and girls with disabilities is called the “Nairobi principles.” There was a meeting in Nairobi in October 2018. I will send to the committee the information regarding the Nairobi principles. It represents what happens.
Again, this was a conference in Nairobi that brought together sexual and reproductive rights activists, women with disabilities from around the world and women from women-serving organizations. That is, of course, what we need to see more of; we need to see all women brought together to make choices and to make clear what those choices need to be and not have our bodies invaded by governments, policy-makers and state parties.
The Nairobi principles unpack in a powerful way the issues of sexual and reproductive rights, abortion and disability together. It is done in a way that begins to really respect the concept of intersectional feminist practice, and is a demonstration of what will happen if we actually begin to bring women together to consider and share the needs of all women from an intersectional perspective.
Also, it is absolutely critical to hear the personal stories of women with disabilities who have been sterilized, including the woman at the centre of the Eve case. I saw her at a women’s conference last year, and I’m telling you that it is really important to hear from her. I hope you will bring her forward. That can be arranged through the Canadian Association for Community Living.
We also need to look at this huge gap in terms of access to sexual and reproductive rights and the issue of sex education to be provided to, especially, young women and girls with intellectual and other cognitive disabilities, who are generally the most compromised in terms of the legal capacity issue. Thank you.
Ms. Etowa: I support the notion of getting first-hand or personal experience stories from the women who experienced this, but also from those who attempted to examine the issue and were stalled. They also have a different kind of experience in witnessing the frustration in the community but cannot do anything about it.
In terms of gaps, documenting the experiences of women of African descent is a gap in Canada that we have not documented yet. Most of the stories we’ve heard, even the literature and studies that have been done, have not examined Atlantic Canada. We need to look at Atlantic Canada and also women of African descent from that area.
I believe this is an issue that needs to be looked at with an intersectional lens so we are actually situating it within the broader issues of racism and discrimination that women are facing, as well as the lack of education, poverty and unemployment. These are all issues that these women talked about in our studies. That affects their ability to even self‑advocate for better options for treatment. That needs to be examined as a whole. Thank you.
Ms. Holmes: There is a saying in the disability community: “Nothing about us without us.” That’s a principle to keep at the fore of this.
Yes, there are Canadians who are willing to have these discussions about their experiences of medicalization and impairment of their sexual and reproductive rights through the management of their intersex presentation.
I wanted to pick up on something I think Dr. Brayton was saying. There are also families who have had one intersex child and are discouraged from having any further children. This is the reverse from the 1950s when the intersex child would be interfered with, assigned a sex and the family would be told to “move away and try to have another baby as fast as possible to prove that you don’t create more monsters.” This changed more recently to “Don’t have any more children at all because this is a heritable condition.” There is that end of it, of pressuring the mothers in particular.
It’s really not necessary to hear further from the professional associations involved. The surgeons have their own very powerful platforms that they use to call us “green-wellied loons,” “hysterics” and to do all of the discrediting work that is so recognizable.
There are surgeons who have rethought and changed their practice, but they are few and far between. They are afraid, also, of being discredited by their own professional associations. They can, however, be contacted, and it would be worth hearing from them. There is a man I know who used to perform clitorectomies regularly. He had an epiphany and he said, “Why am I doing this? As a gay man who understands the repression and oppression of sexuality, why am I doing this just to please a set of bodily norms and parents who have been made afraid?”
So, yes, “nothing about us without us.”
The Chair: Thank you.
Senator Pate: Thank you to all of you for the work you do and for joining us.
I want to ask a question about another layer of intersectionality, and that is what folks know in this area about the prevalence of this issue in prisons, in child welfare settings, in psychiatric institutions — all the places where things have often happened involuntarily.
Also, I’m curious about the link between involuntary birth control — the number of young people who, because they are poor, racialized or are seen as having problematic behaviour, end up being put on birth control, some of which can be physically damaging, depending on the type — as well as the abortions and links. Do you think that should be part of it, or should we focus on sterilization alone?
Ms. Harris: I will just speak briefly to that. Before I joined the Qikiqtani Truth Commission as the managing historian, I worked on a study over a couple of years from a built heritage point of view on all the psychiatric hospitals in Ontario, including what were called “asylums for idiots.” From the records from those institutions, and based upon my conversations with the residents who were left in some of the institutions like Smiths Falls, I think it was 100 per cent where sterilizations occurred and all kinds of procedures were Dene. Again, the records are there and they need to be looked at.
Ms. Brayton: Thank you for asking that question. The institutional issue is an enormous one, whether it is prisons, the institutionalization of young women with disabilities because there’s no housing or the institutionalization of older people, especially older women.
It is important to understand that one of the biggest challenges we have as advocates in this country is a resistance to institutional monitoring and how critical it is for this government and for Canada to understand that, as we have heard clearly today, we are not above human rights violations of the most profound type. Women’s bodily autonomy is taken from them on a consistent basis. This is not something that happened in the past; as you heard so much from us today, it happens now.
It’s about understanding that we need to begin collecting proper information, that we cannot let the medical profession keep us from understanding what is happening in terms of requests for getting more information about what is happening, because what is happening in institutions today is critical. We are not protecting women and girls; we are making them further vulnerable by the positions we put them in again.
I’ll come back to this issue of institutional monitoring. It’s critical that we look at women in prisons and long-term care and that we understand that they are indeed some of the most vulnerable women in our country. They have nobody to protect them. There are organizations like Elizabeth Fry, but they are not empowered to get that kind of information to protect individuals in those circumstances. I think it’s important that one of the things we look at going forward is what kind of monitoring mechanisms and data we can begin to collect to better understand the enormity of this problem and how it affects women and girls with disabilities in Canada.
The Chair: Would anyone else like to respond to that?
Ms. Etowa: I would add that the literature clearly points out the need to look at the prison system as one of the areas where this is happening. I think it’s one of the institutions that could benefit from a close study.
Ms. Holmes: I would like to address the issue from two different perspectives. The first is about institutional change. Sometimes policy is easier to handle than law or inquiry. The other is about a lost history.
I’ll start with the lost history. In the 1940s, 1950s, 1960s to the mid-1970s, it was common practice for children who presented with Turner syndrome 45,XO that has deafness, some congenital heart anomalies and shortness of stature presenting very obviously in childhood to be institutionalized. Those with Klinefelter syndrome, which is a 46,XXY or 47 and so on, also because of presentation with recognizable features were also sent to institutions.
Both groups were thought to be intellectually incapable, but their intellectual incapacities were imposed upon them by the institutional setting. We now know, through younger populations who survived prenatal screening for whatever reason, that there’s no intellectual issue associated with either of these presentations. But the history of what happened and how many hundreds there may have been is anecdotal in the clinical literature. We should acknowledge it and there really isn’t anything to do about it. Those people are long dead.
In 2011 the Children’s Aid Society of Toronto put policy in place that prevents a child in their care from having surgery to interfere on their bodies and prefers parents and foster parents who will not impose those kinds of surgeries. This is very important because it helps us to avoid a case like the M.C. case in the United States, which was just settled out of court as a civil suit in which the child was awarded $400,000 in trust for the damage to his body. The child was assigned female at birth, and all of these surgeries were imposed upon that child while in care. The social workers, the surgeons and the state were all sued by the adoptive parents after the child, in early childhood, said, “I’m actually a boy.” And this is a 46,XY male who cannot ever get back what was taken from him. Sorry, $400,000 spread across a state, a hospital, five surgeons and an entire children’s aid equivalent is pennies. It is not much of a dissuading factor and sets no precedent in the legal sense.
Certainly, it is a caution about what is possible here and what we should be preventing. Thank you.
The Chair: Thank you all very much. Obviously, we could have had much more time devoted to this panel, and I want to thank you all for your invaluable testimony this morning. You’ve clearly contributed a lot to our understanding of the scope of the issue, which will help us as we move forward.
I want to mention one thing for the record. The Canadian Association for Community Living was mentioned by Ms. Brayton. We have been in touch with them and they are actually sending us a brief that we will have this week, so we will hear from that organization as well.
On our second panel today, we will hear from government officials. Let me introduce Dr. Tom Wong, Chief Medical Officer of Public Health and Executive Director, Indigenous Services Canada; and Abby Hoffman, Assistant Deputy Minister, Strategic Policy Branch, Health Canada. Again, each department has been asked to make a five-minute opening statement and then we shall have questions from the senators.
Dr. Wong, we’ll start with you.
Dr. Tom Wong, Chief Medical Officer of Public Health and Executive Director, Department of Indigenous Services Canada: I’m very glad to be here. Thank you very much for inviting me to appear before this committee on the critical issue of forced and coerced sterilization.
First of all, I would like to begin by acknowledging that we are meeting on the traditional territory of the Algonquin people.
[Translation]
We are all here because we are disturbed by reports of forced and coerced sterilization of Indigenous women in this country.
It’s unacceptable.
[English]
My colleague Abby Hoffman will discuss forced and coerced sterilization as a serious violation of human rights and medical ethics. It is also a form of gender-based violence and evidence of the broader need to eliminate racism and discriminatory practices, as we heard before.
These incidents, among others, and some of the incidents reported by Senator Boyer and Dr. Judy Bartlett, compel us to seek to ensure cultural safety and humility in health systems to improve culturally competent, informed consent and to remove barriers that Indigenous women face when seeking health services in this country.
Addressing racism in health systems is a matter of reconciliation, as cited by the Truth and Reconciliation Commission. The Inter-American Commission on Human Rights recommended that Canada produce an informational brochure for health care providers and patients on proper and informed consent in the context of Indigenous women’s health services. To that end, we have entered into an agreement with the National Collaborating Centre on Aboriginal Health, who has agreed to facilitate this work in partnership with the three national Indigenous women’s organizations: The Native Women’s Association of Canada, Pauktuutit Inuit Women of Canada and Les Femmes Michif Otipemisiwak. This work is under way.
The collaborating centre will be hosting a national forum this fall to mobilize Indigenous and professional organizations to take collaborative steps on Indigenous women’s reproductive health and to develop guidelines on free, prior and informed consent regarding sterilization procedures.
[Translation]
We have also expanded services through the Hope for Wellness line, which is available 24 hours a day, seven days a week. Anyone who has been impacted and requires mental health or crisis supports can call the Hope for Wellness line or chat online.
[English]
In January this year, we established a new advisory committee of Indigenous women’s well-being made up of representatives from national Indigenous organizations, national Indigenous women’s organizations, plus the National Aboriginal Council of Midwives, the National Aboriginal Circle Against Family Violence and The Society of Obstetricians and Gynaecologists of Canada. This committee informs the department on current and emerging issues.
At the most recent meeting, committee members identified promoting culturally safe sexual and reproductive health as a priority. The committee is currently drafting an action plan to implement this priority.
Indigenous Services Canada’s Maternal Child Health Program, or MCH program, offers community-based home visiting services by nurses and family visitors to more than 8,000 pregnant women and families with young children in over 300 First Nations communities. Budget 2017 increased current program funding of approximately $25 million annually, by $21 million over five years.
Recognizing the importance of returning birth to communities, Budget 2017 also invested $6 million over five years for Indigenous midwifery — the first ever federal investment in this area. Midwifery care to Indigenous communities has been identified as a pathway that helps improve the health and well‑being of women, their children and the entire community. Indigenous midwifery is a way to bring birthing back to communities. Informed choice is recognized as an essential tenet of midwifery care.
Budget 2017 also included new investments to strengthen maternal supports by ensuring that all First Nations and Inuit women are entitled to an escort if they have to leave their community for childbirth, recognizing that no woman should have to birth alone. We know that the presence of a support person in labour offers many benefits to a labouring woman, including assisting her with decision-making and advocating for her wishes.
The Government of Canada has committed to implementing the Truth and Reconciliation Commission of Canada: Calls to Action, including Calls 22, 23 and 24, which pertain to using and recognizing the value of Indigenous healing practices, retaining and increasing the number of Indigenous health care professionals and providing anti-racism and cultural competency training for all medical and nursing students.
The British Columbia First Nations Health Authority has done remarkable work within the province and with the regional health authorities in finalizing a declaration on cultural health safety, as well as informing cultural safety and humility training across the provincial health system. It is presently developing the first-ever cultural safety and humility standard in partnership with the Health Standards Organization, which is affiliated with Accreditation Canada. We are hopeful that other provinces and territories will look to this work as promising practice. Indigenous Services Canada is a proud signatory to this declaration.
We cannot undertake this work unilaterally. The Native Women’s Association of Canada, Pauktuutit and Les Femmes Michif Otipemisiwak have been providing leadership on Indigenous women’s health for many years. We are encouraged by their good work and guidance and continue to seek their views and support in the work we are doing.
It will take the efforts of many to ensure that structural racism and the effects of colonization do not interfere with the health of Indigenous women.
[Translation]
I would be pleased to take your questions after Ms. Hoffman gives her remarks. Thank you.
Abby Hoffman, Assistant Deputy Minister, Strategic Policy Branch, Health Canada: Thank you. I would like to begin by acknowledging that the land on which we are meeting today is the traditional and unceded territory of the Algonquin nation.
[English]
As Dr. Wong has expressed, forced or coerced sterilization is clearly a form of gender-based violence, and we believe it is unacceptable that this could happen to any woman anywhere in Canada’s health care system.
I want to commend Senator Boyer for her leadership on this issue and the committee for undertaking this work. We know, as we heard from the earlier panellists, that racism and discrimination persist in our society and that women are often impacted by attitudes and associated practices and behaviours. Unfortunately, the health care system is no exception.
I know you have heard from Indigenous women’s organizations earlier on in your work who have shared their perspectives and concerns on this subject, including the need to build awareness of informed consent among Indigenous women and, of course, on the part of medical practitioners. Your first panel in this session today has drawn attention to the risks for other Canadian women.
I will focus my brief remarks on data, jurisdictional responsibility and informed consent.
Let me just speak briefly to data. I know the committee is interested in understanding the scope of this issue and who is impacted. Unfortunately, information and data on forced sterilization in Canada is quite limited. We do not, at Health Canada as a department, collect or track data on how often or under what conditions sterilization is occurring.
However, following a meeting of the House of Commons Standing Committee on Health at the end of January, we asked the Canadian Institute of Health Information, CIHI, to provide data on tubal ligations performed across the country, both those associated with hospital-based births and those that occurred other than in a birth situation.
As you likely know, CIHI is the most comprehensive source of health data in Canada, and it works with the federal and provincial/territorial governments to collect, analyze and make information available on a wide array of health and health-care concerns in Canada. CIHI uses clinical administrative data that it collects from provinces and territories. The CIHI data is not broken down by ethnicity, nor does it indicate if and how consent was obtained for any procedure. The data can, nonetheless, be used as a starting point for further analysis.
The CIHI data indicates that, overall, the rate of sterilization has decreased steadily in Canada over the past 15 years. Among females ages 15 to 49, the rate of sterilization has decreased from 50 procedures of sterilization per 10,000 in 2004-05 to 30 per 10,000 population in 2017-18.
But there are variations across the country that are of interest. For example, in Saskatchewan, which still has a relatively high rate of sterilizations, rather than a slow decline, which has been the trend across the country, a very substantial decrease took place just in the last four years. They went from 67 sterilizations per 10,000 in 2010-11 to 47 per 10,000 in 2017-18.
The CIHI data also indicate some significant variations across Canada. In terms of overall sterilization rates, Saskatchewan, Newfoundland, the Northwest Territories and Yukon are among the highest, bearing in mind that in some of those jurisdictions, population size is relatively small. There are some variations, as well, in the numbers of sterilizations performed at the same time as the delivery of a baby versus sterilizations performed as separate hospital procedures.
We should be cautious about drawing easy or unwarranted conclusions. Factors such as the age distribution of the population and population growth need to be considered, as well as matters related to access to other family planning or contraceptive and reproductive services. Those are issues that would need to be looked at in any analysis. I can respond to other questions about data if senators wish.
I will touch briefly on jurisdiction. We all know it’s the responsibility of all players in the health system to ensure that patients have access to health services that are free from bias and discrimination. That’s a hallmark of the Canadian system.
As you know, in Canada, health care is a complex system of shared jurisdictions, where both the federal government and the provinces and territories have important and distinct responsibilities. At the federal level, we play important roles to ensure the health and safety of Canadians. We make financial contributions to provinces and territories through the Canada Health Transfer, and we set, and hopefully maintain, national standards for access to health-care services through the Canada Health Act.
Provincial and territorial governments, and their related public authorities, have the primary responsibility for health-care delivery, the funding and oversight of hospitals, the administration of provincial health insurance plans and the recognition and regulation of health professions. Each province and territory has laid out through statute its own framework for oversight of health-care professionals by self-regulating bodies. These bodies are responsible, in turn, for setting standards of practice, credentialing providers, for reviewing and responding to complaints made against health care professionals under their authority, for education and for disciplinary action when warranted.
Let me make a few comments about informed consent.
Female patients in many studies report multiple concerns about informed consent, including when and how it is obtained. Studies involving women giving consent to gynecological procedures frequently found that women felt compelled to sign a consent form, despite their preference or expressed preference not to undertake the procedure. In some cases, women consenting to surgery said they thought they did not have a choice about signing a consent form.
Health care providers are required to ensure they have the informed consent of a patient as part of the decision-making process on treatment. This is an essential aspect of clinical care, whether a patient is agreeing to receive a flu shot or to stop chemotherapy for progressive cancer. Informed consent means that the patient has received information about the nature of the treatment, the expected benefits, risks and side effects of the treatment, alternative courses of action and likely consequences of not receiving treatment.
For consent to be valid, the consenting individual must have the capacity to understand what is being conveyed to them, to make an informed decision and to provide their consent voluntarily.
Wording, legislation and processes vary across jurisdictions, but all provinces and territories in Canada follow the same general principles for informed consent and capacity to consent. Informed consent is stipulated and required by health practitioner regulatory bodies and associations, such as the Canadian Medical Association in its code of ethics, as well as by the College of Family Physicians of Canada and the Royal College of Physicians and Surgeons. The Canadian Medical Protective Association has produced one of the most comprehensive models and guides for capacity and medical consent.
These informed consent policies are administered at the local level mainly within hospitals, which means that hospital administrators, medical staff and health authorities are the stewards of uniform and meaningful application of informed consent. However, based upon the documented experiences of women, it is fair to say that further efforts to improve the interactions between patients and providers on informed consent is required. Women need to fully understand and consent to what is happening to their bodies, and they need to be assisted to do that, and providers need to be better equipped to have these discussions in a way that recognizes and respects the situation of the patient, including issues such as language, culture and other realities of the lives of individual patients.
Let me just conclude with a few words about federal action.
While provinces and territories provide universally accessible and publicly insured health services to their residents, the federal government can and does use its convening role to advance pan-Canadian approaches on issues such as informed consent and cultural safety in the health care system. Dr. Wong has elaborated on work in his department. Let me just touch on one aspect of Health Canada’s actions specific to improving cultural safety.
Last December, the Minister of Health and the former Minister of Indigenous Services wrote to provincial and territorial ministers, national health organizations and Indigenous organizations to seek their collaboration with and participation in a federal-provincial-territorial working group to advance cultural safety and humility in the health care system. We are working now to establish this group so that it can engage effectively with Indigenous groups and national provider organizations on measures to improve cultural safety in the health care system. We have had productive discussions with provinces and territories, and we look forward to building on the good work already under way across the country on raising awareness and training.
I’d be pleased to answer your questions. Thank you.
The Chair: Thank you both. We will now go to questions.
Senator Cordy: Thank you very much for being with us this morning. It’s always important to have government officials. I know with health care in Canada it’s always a little bit challenging, because there are the federal perspective and the provincial perspective.
I’d like to go back to the issue of informed consent. Dr. Wong, you spoke about the conference you’re having, and you will be developing guidance on free, prior and informed consent. Ms. Hoffman, you also spoke a lot about informed consent. You’ve both given excellent descriptions of what informed consent should be.
However, witnesses before us spoke about, for instance, a woman in labour, and having a form put in front of her to sign that she would be sterilized after she had the baby. Anybody who’s been in labour would tell you that you would either sign anything that anybody put in front of you, or get into a fistfight in your hospital room with anybody who would try to do that. Whether it’s signed or not, I don’t think anybody could say that was informed consent.
You’ve spoken about health care providers having to ensure that they understand what informed consent is. You’ve also given us wonderful definitions of informed consent that I would like to put in our report, but it’s not happening.
When medical practitioners are in training, are they given specific training on what free, prior and informed consent is? That’s extremely important in talking about forced sterilization.
Dr. Wong: Thank you for your excellent question. One of the really important parts of medical and nursing training for all health professionals regarding informed consent is to make sure that situations like the one you mentioned, when a woman is in active labour and being asked to give consent, is not acceptable.
At this point, it is so important for us — and I see this as a gap — to actually be working with medical schools, hospitals, regulatory bodies, the CMPA and other organizations in the Indigenous context. I would actually defer to Abby Hoffmann to expand that to the entire Canadian context in other populations.
We heard from the first panel that there are ethno-cultural groups that have traditionally faced barriers in getting truly free, prior, informed consent. The example you gave does not constitute free, prior, informed consent. A lot more work needs to be done in all of those educational institutions and regulatory bodies.
Ms. Hoffman: I will just elaborate by underscoring a lot of what Dr. Wong said. To your specific question, Senator Cordy, as to whether there is education in medical and health professional training, absolutely. It is very extensive. There is ongoing awareness-raising in training about informed consent from the Community of Medical Regulators, provincial and territorial health regulatory bodies, the CMPA and so on.
The part of this that needs to be extended is what I’ll call the crosswalk to cultural safety and cultural competency. I’m referring to the need for greater awareness of the context within which consent may be sought or on the part of the individual actually seemingly given to a health care provider. Not all of these circumstances are equal, as you very rightly pointed out. What might seem like a situation where consent may have been freely given might actually, when one peels back the layers, reflect a bit of bias on the part of the provider or a lack of awareness of the circumstances of the individual with whom they are dealing.
What we need here is not just more internalizing of the legal parameters around informed consent, but more education that would incent a provider to fully consider all of the circumstances of any patient or individual with whom they are dealing. That’s the way forward on the issue of informed consent.
Senator Cordy: Dr. Wong, you’ve spoken about the session you’ll be having, the agreement, the facility and working with Indigenous women’s organizations. We’ve heard a lot about this being racialized and with women in poverty. Is it also important to explain to them what informed consent is? If you are very poor and marginalized, a doctor or a nurse is somebody you look up to. How do you disagree with the doctor or nurse? It’s very easy for us to go into a doctor’s office and disagree, but in those situations it is very challenging.
Dr. Wong: Yes, it is indeed. The meeting I was referring to is with the National Collaborating Centre for Aboriginal Health and other Indigenous organizations. We are planning to actually organize the meeting in such a way that we have Indigenous communities, Indigenous women, Indigenous organizations as well as professional organizations all sit down at the table in the meeting. That way, those points of view are heard from the community standpoint.
It goes back to our first panel: “Nothing about us without us.”
Senator Boyer: I have a question for you, Dr. Wong. I’m glad to see you working with National Collaborating Centre for Aboriginal Health. Is that Dr. Margo Greenwood you are working with?
Dr. Wong: Yes.
Senator Boyer: Dr. Greenwood is well-known in the area, so I’m happy to hear that.
I’m wondering if you are familiar with the work that Maria Ysabel Cedano from Peru has done and talked to us about regarding the Peruvian examples of forced sterilization that was going on in their country and what they have done to deal with it. I’m thinking about the registry they have produced. Is the national collaborating centre in any position to create something like a registry to collect data that Ms. Hoffman talked about? Or would it be able to set up a crisis line that would be useful to women and deal with some of those crisis-management issues?
Dr. Wong: Perhaps I will start, before my colleague Abby Hoffman comments.
Regarding the Peruvian experience with the registry, we are not very familiar with that but we will be very interested to learn from you and your Peruvian colleagues about their registry.
Whether it is possible for Dr. Margo Greenwood to work with others and work on some form of an approach like that, whenever there is a gap we need to find solutions for those. That’s certainly one of the many possibilities to look at.
Ms. Hoffman: I’m not specifically familiar enough with the centre to know whether setting up some sort of registry is something that they would have capacity to do or get support to do.
I would say that understanding better the dynamics of particular instances where someone has experienced forced sterilization can be extremely illuminating for really understanding some of the shortfalls in the issue we were taking about just a moment ago, informed consent. Then there is an understanding of a situation that involves two parties with very different kinds of authority, responsibility, reputation and so on.
If I may, Senator Cordy, when you said that it’s easy for the people in this room to argue a point with a medical professional, that might be true but not necessarily. For someone whose circumstances are bleaker and more problematic than ours, it is even less likely.
There will be lots of reasons to have registries and to have access to individual women who may be able to talk about what their experiences are. I can’t add anything to the registry phenomenon in general.
Senator Boyer: The Peruvian example is a very good one on how they’ve been dealing with it. There are 6,000 women registered. During a period of time in Peru, it was law that women would be sterilized. Over 200,000 women were sterilized at that time. Of course, they were Indigenous and poor. They came from the Amazonian area, and they actually decided, “no more.” They took action, and they created a registry. The government is funding it. That was my interest.
The government really needs to fund a third party, such as NCCAH, an Indigenous organization, to enable them to deliver these types of services, and the same type of services they offer in the registry. Once the women are registered, they are able to access health care, psychiatric care and legal care. It is a holistic approach to their healing and also reparation for the damage done to them. It is something to look at.
I suggest that possibly Dr. Greenwood could be in touch with Maria Cedano, who would be happy to share her experience.
It was 2017 that Dr. Bartlett and I put out the report on the external review. At the time, the government made a statement that this is horrifying, this is a human rights violation and we need to look at cultural safety and humility. Then we had two, three, four or five women joining a class-action lawsuit. Then it grew to 60 and then 100. I am inundated with calls and people contacting me saying, “What’s going on? I’ve been trying to get pregnant, and I remember signing that,” and, “Gee, I think it was a consent form.”
We’ve got a gap here. In 2017 this began to come to light. In 2018, we heard, on our panel, that another Indigenous woman has been sterilized against her will in Saskatchewan. What has happened? Is the cultural safety and humility plan not working? How and when will it stop? How do you plan to do that?
Ms. Hoffman: I may just make an initial comment here, which I’m quite sure is not going to be very satisfying at all. Even as cultural safety, cultural humility and informed consent, training and awareness and so on, is moving out in various parts of the country, it is not going to, in and of itself, overnight, forestall the circumstances you are speaking about. Some people may not get the training. Some may get the training but not really internalize what it means in the real world. They may look at it more as a legal or administrative construct.
We simply acknowledge that this is a huge hill to climb. It will talk a while.
Senator Boyer: It is just that cultural safety is very different from physically cutting somebody’s fallopian tubes. That is plain and simple.
Dr. Wong: Yes. I want to add to Abby’s comment. We were glad to learn that the Royal College of Physicians and Surgeons of Canada over a year ago, after listening to the advice of Indigenous voices and their Indigenous health committee, started implementing a new policy for training of all medical specialists in Canada, requiring them to have a certain degree of training dedicated to Indigenous culture and health issues. This is preventive and proactive.
They are also putting that into the national exams. For specialists to attain their specialty and licence, they are required to pass a number of national exams. There will be questions specifically to try to assess the competency there. As well, they put Indigenous cultural safety and Indigenous health issues into the requirement for accreditation, regardless of specialty.
That’s one recent development. As Abby said, the changes will take a bit of time, changing how people and providers think when giving care. It is the system that’s failing the patients.
Senator Boyer: Thank you.
Senator Pate: Thank you both for joining us. I wanted to come back to something you raised, Ms. Hoffman, around informed consent in terms of the training of medical professionals. I am also curious if anything is being done around information for patients.
As we saw in the discussion of Bill C-51, which was the consent to sexual activity, the understanding, even within the Justice Department and the understanding of many Canadians, particularly young people, about what consent means was woefully lacking. Many people seemed to not understand, including many lawyers, how you achieve informed consent.
What measures are being undertaken there, and what public education campaigns, if not in play, would you anticipate or recommend?
Ms. Hoffman: I may not be fully qualified to speak to this because my impression — I’m giving you an impressionistic response, Senator Pate — is that information for patients or families is probably pretty thin.
If you have ever been admitted to a hospital and go to an office and you sign a whole slew of papers, almost all of which have to do with insurance and logistics of your hospital stay, there is rarely a brochure or any piece of paper that explains some basic concepts. Yet almost everybody during a hospital stay is asked something on the spur of the moment, by any one of a number of providers. These may be relatively small interventions, but, nonetheless, they are being asked. There is a type of consent exchanged that is occurring. It is a very good point.
We are certainly supporting some activities, for example, with respect to end-of-life care. We are doing a lot, including with the responsible NGOs, to make sure people understand about advance directives, which you could say is a type of informed consent process. I would not say at the moment that there is a social movement around issues of consent and what it means that is directed to civil society generally. It is a really important point and a great observation.
The Chair: Ms. Hoffman, in your testimony you mentioned that Health Canada does not collect or track data on how often and under what conditions sterilization occurs. Is that something Health Canada is looking at? Is it something you would recommend that we explore further in this study in terms of the need or time for changing that?
Ms. Hoffman: The reason I said that — and maybe I didn’t express it well — was simply to say that we do not collect data. The Canadian Institute for Health Information collects data. If I could add something that may be helpful to the committee: The data set that I was commenting on has data at the provincial or territorial jurisdiction level.
I did inquire whether that data could be secured at the institutional level, because I think it would be more helpful. One could match an institution with its catchment population and understand more about ethnicity, education, culture, et cetera, and we could secure more revealing information.
I don’t think you would find, however, information at the institutional level that’s going to tell anything about the consent process.
I was really just saying that even though the data is not what I think is needed to sustain particular lines of inquiry, one could get more information. I’ve also been informed that it depends on the size of the institution. If it’s a small institution and the numbers are small, likely for privacy reasons that data would not be accessible. There is more data here that could be obtained from CIHI. If we are interested in data, that’s where we go to it.
The Chair: On the previous panel, Dr. Etowa talked about the lack of health data by race. Would either of you care to comment on that?
Ms. Hoffman: I don’t want to say there is no data, but to validate what your earlier witness said data is not conventionally collected by language, ethnicity, race and so on. There is a lot of demand for it but, generally speaking, it is not.
Dr. Wong, go ahead.
Dr. Wong: Abby, I concur with what you said. We are likewise concerned about the lack of ethnocultural and socio‑economic breakdown for different types of data, just like our first panel highlighting the importance of having that kind of information. For example, to date, we do not have any type of data on sterilization as it pertains to the size of the sterilizations of Indigenous women, of all the sterilization procedures being done.
To the second point Abby mentioned about trying to get to the next level, which is the reason for the sterilization and whether the consent was proper or not. We don’t even have that breakdown. We have the information from CIHI about the number of surgical procedures for sterilization in the country, broken down by provinces and territories, but we do not have the ethnocultural breakdown. That piece of information would be very helpful.
The Chair: I have one last question. You have both highlighted some initiatives that are in place, where you are beginning to address issues of forced sterilization and informed consent for Indigenous women specifically. That gives us some pause for hope, although we know that is tempered.
From the last panel we heard about issues of forced sterilization and informed consent for women with disabilities, intersex individuals and African Canadian women. Is Health Canada looking at any initiatives that would look at those issues from the perspective of those specific groups? There are others we have not heard from as well.
Ms. Hoffman: I have to be candid and say, no, not at this time. I deliberately came because I wanted to hear the testimony from the witnesses on the first panel this morning, which was extremely illuminating. We will take that back.
You are right that there is a big focus now on cultural safety and humility with respect to how the needs of Indigenous people are met and dealt with as individuals in health systems. It is just logic that for other groups — whether you want to call them vulnerable, “vulnerablized,” disadvantaged, or whatever — there is no reason to believe that they are not subject to many of the prejudices, as the witnesses said this morning. We need to take that on board.
The Chair: Anything to add, Dr. Wong?
Dr. Wong: No.
The Chair: Let me thank you both for coming here today. It has been helpful for us to hear from both your departments. We appreciate it. We look forward to what happens in the next steps with the various initiatives that you have highlighted to for us. Thank you.
Thank you, senators. The meeting is adjourned.
(The committee adjourned. )