A hall full of Oncologists and national press gathered to hear the parents of Makayla Sault and the mother of J.J. speak at McMaster University.
Both families were invited to read prepared statements as part of a community panel addressing the prejudice they recently faced in the healthcare system and media – and why indigenous people continue to have traumatic experiences in the healthcare system.
Sonya Sault said her daughter Makayla’s experience at McMaster Children’s Hospital was traumatizing. “Every time Makayla approached the hospital her body began shaking,” she said. “She never got over the fear she experienced when she heard her parents threatened with jail and she and her brothers threatened with apprehension.”
J.J.’s mother read a written statement and clarified that she will be willing to share her story once the March 13th deadline for appeal to her case has passed.
“I have met with provincial government representatives who have been respectful and compassionate,” she said. “The issue is not whether traditional medicine will be respected but how it will be respected. And how and when the two systems can work together.”
Makayla’s mother Sonya Sault read an emotional written statement about their experiences at McMaster Children’s Hospital.
She also sought to correct inaccuracies reported about the child across national media.
Sault clarified that after Makayla’s diagnosis of Acute Lymphoblastic Leukemia with a positive Philadelphia Chromosome the child was given a 72% survival rate – if she made it through the five or more years of chemotherapy.
“Not 90%, not 95% – 72%,” she read. “We also learned from doctors at McMaster that chemotherapy is less effective and more punishing for indigenous children. The reasons for this are ‘not well understood’ we were told. In other words – [Makayla] had a 1 in 3 chance of dying from leukemia with the chemotherapy.”
They also bravely confronted the erroneous media reports and opinions their family has been subject to following the child’s case making world news headlines over the last year. She said, “The controversy, attention and inaccurate reporting have caused our family so much distress we have not been able to truly mourn Makayla.”
Sault addressed media criticisms of her choice to travel to the Hippocrates Health Institute, saying it was upsetting to see her private family vacation exploited by the members of the press.
Dr. Dawn Martin Hill, Associate Professor of Indigenous Studies at McMaster University, spoke about how prejudices about indigenous people latent in the foundations of the healthcare system and mainstream media create great psychological distress for indigenous people across Canada.
A newspaper article from a large Canadian newspaper was quoted which criticized the choice both families made to travel to the Hippocrates Health Institute in Florida. Martin-Hill addressed the truth of the matter in its proper context.
“Neither family went to Florida seeking alternative medicine,” she said. “They fled Canada: fleeing threats of apprehension, incarceration and hostile acts of aggression. In the US they found peace. Think about that. A safe place. That is all. Hope we cleared that up. They did not go there for any other reason than to get away from what was going on here.”
Martin-Hill said that in all of Canada’s reconciliation with First Nations people, the healthcare community has never been a part of those discussions.
“The healthcare industry has not only never acknowledged there is a problem, they refuse to discuss any role they may have played in the unethical practices towards First Nations,” said Martin-Hill.
“Collaboration not coercion,” Martin-Hill said. “Using CAS or courts to apprehend First Nations children is loaded with horrific unjust actions Canadian institutions have exacted on First Nations people opening up deep wounds of historical trauma.”
Martin-Hill again invited the McMaster Children’s Hospital and Hamilton Health Sciences to work with the McMaster Indigenous Studies department to collaborate and ensure that staff are aware of the historical traumas enacted upon First Nations people by the healthcare system so staff are better able to treat indigenous patients effectively.
“I am aware there are many good doctors here at McMaster. We need your support. We need you to stand up and work with us. I know you are here,” said Martin-Hill. “We need integrative policies and practices so that J.J. does not have to be in a hostile environment.”