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MONTREAL — It has been three years since Joyce Echaquan died in hospital after filming staff insulting her, but for her family and her First Nation, the fight continues to ensure a legacy of better treatment for Indigenous people.

In July, her Atikamekw community officially launched the Joyce's Principle office, which aims to lobby for the adoption of a document that community members presented to the Quebec and Canadian governments after Echaquan's death on Sept. 28, 2020.

Joyce's Principle "aims to guarantee to all Indigenous people the right of equitable access, without any discrimination, to all social and health services, as well as the right to enjoy the best possible physical, mental, emotional and spiritual health."

It includes a statement by Echaquan's husband, Carol Dubé, who asks that his wife's voice "be the beginning of real change for all Indigenous people so no one ever again falls victim to systemic racism."

Jennifer Petiquay-Dufresne, executive director of the new office, says Echaquan's death exposed the reality that many Indigenous people face when they seek help from the health system.

"What I say often is that Joyce's death was a light, a lantern that she sent us to shed light on the situation, to put it in view for everyone," Petiquay-Dufresne said in a phone interview.

Echaquan, a 37-year-old mother of seven from Manawan, filmed herself on Facebook Live as a nurse and an orderly were heard making derogatory comments toward her while she suffered at a hospital in Joliette, Que., northeast of Montreal. The video of her treatment in September 2020 went viral and drew outrage and condemnation across the country.

A coroner said in 2021 that Echaquan would likely still be alive if she were a white woman and that systemic racism "undeniably'' contributed to her death from pulmonary edema, an excess of fluid in the lungs. The report also recommended that the Quebec government acknowledge the existence of systemic racism and root it out of institutions.

Petiquay-Dufresne says Indigenous people still face racism and systemic discrimination within the health system, ranging from seeing their health concerns dismissed to a lack of services in their home communities. 

Joyce's Principle asks governments and institutions to put in place measures to ensure equitable treatment in the health system. Those measures include a recognition and respect of Indigenous people’s traditional and living knowledge when it comes to health, and a recognition of systemic racism.

While it has been adopted by a number of unions, professional medical orders and universities, the provincial government has not followed suit. Premier François Legault's government agreed to adopt much of the document, but it does not accept the reference to systemic racism.

Petiquay-Dufresne says there have been positive changes in the health system since Echaquan's death, including cultural sensitivity training, and hiring and consulting with Indigenous people on how to improve the system.

However, she said the failure to recognize systemic racism remains a barrier to addressing the ways policies, programs and services discriminate against Indigenous people and fail to consider their realities.

"If we're not aware of it, we only perpetrate and continue to allow this racism to exist and continue to cause victims among Indigenous people," she said.

She says the government needs to understand the barriers Indigenous people face when accessing health care, either because of a lack of proper services, the racism they face or feelings of intimidation and fear. 

Earlier this month, the members of the office walked out of a legislature hearing on a government bill to establish a "cultural safety approach" within the health and social services network. 

Its measures include requiring establishments in the health and social services network to take into account the cultural and historical realities of Indigenous people in all interactions with them. However, several Indigenous groups have expressed skepticism, saying the bill doesn't sufficiently recognize the right to self-governance or the existence of systemic racism.

"Joyce's Principle Office does not endorse the colonial practices still present in the Quebec government, and that is why we are leaving this consultation and reiterating our readiness to do things differently together," the organization said in a news release after it walked out.

Petiquay-Dufresne says the relationship with the federal government has been positive, with several upcoming projects that embrace Joyce's Principle.

On Thursday, members of the community will gather at vigils in Joliette and Montreal to remember Echaquan on the anniversary of her death. In the longer term, she says the community will continue to educate and push for better outcomes.

"We have a duty to act, to say how we can collectively make things different, make them better," she said. "Because in the end, everyone will benefit, not just Indigenous people, if we have more respectful and better quality services."

This report by The Canadian Press was first published Sept. 28, 2023.

Morgan Lowrie, The Canadian Press