Earlier this week 11-year-old Makayla Sault died. She was the twinkly-eyed New Credit First Nation girl who made headlines last spring by refusing further chemotherapy for her acute lymphoblastic leukemia. She underwent holistic treatment but suffered a relapse and succumbed to a stroke on Monday. And while Makayla's family blamed her death on the 12 weeks of chemo she completed before abandoning conventional treatment, this does not seem reasonable or even remotely fair. Makayla, it's safe to say, died of cancer.
But little about this story seems reasonable or fair. It is the strange tale of how the rights of the state can come into conflict with – and ultimately be trumped by – the hard-won rights of a specific minority. It is also the story of how superstition and magical thinking can dangerously masquerade as "cultural tradition" to dupe the sick, the young and the desperate. And finally it's the story of how powerful people are sometimes willing to sacrifice the lives of innocents to protect the rights of a historically wronged community.
It is also one of the saddest stories I have ever heard.
Which brings us to the related and ongoing story of J.J., another 11-year-old Ontario First Nations girl (in this case her identity is protected by the Child and Family Services Act) who was also granted the right to refuse chemo late last year – in this case by Justice Gethin Edward, a judge who, like the defendant, grew up in Brantford and is a member of the Six Nations. J.J. also has acute lymphoblastic leukemia. Unlike Makayla, J.J. only did 11 days of chemo and was not deemed able to consent to her treatment – her mother made the choice for her.
Makayla's rarer cancer had a 75-per-cent cure rate if conventionally treated; for J.J., that rate was 90 to 95 per cent. But without chemo, J.J. faces the same fate as Makayla – no one, according to doctors, has ever survived this form of cancer without chemotherapy.
In both cases, the families argued that holistic treatment was an unassailable indigenous right. And while presumably some authentic aboriginal healing rituals took place, both families took their sick little girls to the Hippocrates Health Centre in West Palm Beach, Fla., as soon as they could. There, for a fee of $18,000 each, Makayla and J.J. underwent three-week "life transformation" courses, which consist of a raw food diet and something called BioEnergy Field Intervention. What this "treatment" has to do with ancient aboriginal healing practices is anyone's guess.
The Hippocrates Centre, which is licensed as a massage resort under Florida law, is run by Brian Clement, a man who goes by the title "doctor" but does not have a license to practise medicine. Twice in the past six months, Clement has visited Ontario First Nations communities, including Makayla's and J.J.'s, and given lectures on how his program teaches cancer sufferers to heal themselves. Clement makes his money telling desperate people exactly what they want to hear, regardless of empirical truth.
Makayla didn't see it that way. Nor did her parents. Nor did J.J. and her mother. Presumably they believed Clement because they desperately wanted to see a way around the horrors of chemotherapy. Makayla told the authorities she knew her disease could kill her but that she would rather face death than more chemo – a sentiment almost any oncologist will tell you is common in children (and adults) going through this gruelling but necessary treatment. Makayla also claimed she had a vision of Jesus (not an ancient aboriginal spirit) who said he would heal her.
If Makayla had continued her chemo, she would likely have gone on to live a full and healthy life. Despite this, Brant Children and Family Services did not contest Makayla's request to stop treatment. Why did it do this when the state has a long history of intervening in similar cases involving, for example, the children of Jehovah's Witnesses who refuse blood transfusions?
The difference is that Makayla is aboriginal, and for her the option to refuse "western medicine" in favour of "traditional" treatment is seen as an essential right as opposed to the flat-out death sentence it ended up being. In other words, Makayla's indigenous rights trumped the right of the state to intervene and save her life. So they let her die as a matter of cultural sensitivity, so that other aboriginal rights would not be eroded in the future.
I am not being extreme in saying this. In his controversial judgment, Justice Edward lays out this reasoning quite explicitly, saying that J.J.'s aboriginal right to refuse treatment "cannot be qualified as a right only if it is proven to work by employing a western medical paradigm." To do so, he warns, "would be to leave open the opportunity to perpetually erode aboriginal rights."
What I want to ask Justice Edward is this: How are you protecting the rights of aboriginal people if you allow the vulnerable, the distressed and the ill to be swindled by "holistic" snake oil salesmen? How are you protecting the rights of a historically beleaguered community by sentencing one of its children to almost-certain death?
"Makayla was a wonderful loving child who eloquently exercised her indigenous rights as a First Nations person," Brant Children and Family Services director Andrew Koster said this week when he heard the news of her death. (Translation: A child died, but it wasn't my fault). He added, unnecessarily, that "The parents are a loving couple who loved their daughter deeply."
I have no doubt that is true, but I fail to see how Makayla's death is either rational or fair. What is the point of granting a child a right if will only ensure she ends up with no rights at all?