J.J. has a chance to live!

Over the years I’ve written about a lot of topics. After all, I’ve been at this for more than a decade now, and I still grind out four or five posts per week, with only occasional breaks for vacations or medical or scientific meetings. Topics have included science-based medicine, antivaccine nonsense, topics of general skepticism, and of course medical quackery, among others. There’s one type of recurrent story I’ve been commenting on periodically since 2005, when I began by discussing the case of Katie Wernecke, and these include stories of children with cancer who do not receive the therapy that they need, usually because their parents balk at the toxicity and, more often than not, because the parents—and sometimes the child, too—are choosing quackery instead of effective medicine.

The names of such children that I’ve blogged about started with Katie Wernecke but certainly did not end with her. For example, they include Abraham Cherrix, whose choice of quackery over effective treatment for his lymphoma inspired a truly awful law in Virginia known as Abraham’s law that allows children 14 and over with terminal illnesses to choose quackery instead of medicine and that, when last I learned anything about him, had left him with recurrent lymphoma that keeps popping up. Others include Daniel Hauser, Jacob Stieler, an Amish girl named Sarah Hershberger, and, most recently, a girl who was only identified as Cassandra C, who is being compelled against her mother’s wishes to undergo chemotherapy for her Hodgkin’s lymphoma and fortunately is doing well. Many of these stories have a depressing similarity to them. A child is diagnosed with cancer and undergoes her first course of chemotherapy. The side effects alarm the parents—understandably. If the parents are woo-prone, that can lead to rejection of further chemotherapy, particularly if the tumor has gone into remission, given that it can be really hard to explain why prolonged courses of chemotherapy are needed. These stories usually either end with some agreement being reached that allows the child to pursue woo with conventional therapy.

Such was the case with a particularly thorny couple of cases that involved aboriginal rights in Canada, the confusion of parental rights with aboriginal rights, and some particularly troublesome history and political considerations. The first case was the case of JJ (the name used in the news stories), an aboriginal girl in Canada with lymphoblastic leukemia whose parents took her case to court to allow her mother to take her to undergo “natural healing” under the care of a man named Brian Clement, who runs the Hippocrates Health Institute (HHI) in Florida. Unfortunately, as I discussed, the HHI is a haven of cancer quackery on steroids, much of it based on claims that wheatgrass (including wheatgrass enemas) has magical curative powers. Even though Clement’s quackery had nothing to do with traditional aboriginal medicine, Ontario Court Justice Gethin Edward, who belongs to the same Six Nations band as JJ, ruled that the parents could choose Clement’s quackery instead of chemotherapy, all in the name of “aboriginal rights.” At the time, I characterized the decision as ruling that the parents can let their daughter die.

So I believed at the time. I knew that after the brief course of chemotherapy that JJ had received, recurrence was virtually certain. Not surprisingly, almost right on schedule, JJ’s lymphoblastic leukemia recurred. According to a recent news report, it recurred in March, and JJ is receiving chemotherapy again. I only hope it isn’t too late. As I’ve explained before, a big part of the reason why I get so worked up over these cases. Besides hating the implicit assumption behind such rulings that parents apparently own their children when they do not, I know that the first, best shot at curing a cancer—any cancer, but particularly childhood cancer—is the first shot. Pediatric oncologists learned this the hard way decades ago. Although you wouldn’t know it from what the quacks say, pediatric oncologists don’t treat children with multiple courses of chemotherapy over the course of up to over two years because they like torturing children with chemotherapy toxicity. They do it because they learned very quickly that, although a course of chemotherapy can often produce a complete remission rapidly, cancers like lymphoblastic leukemia would rapidly recur and kill the patient. Worse, recurrent leukemias are harder to treat, and the odds of success go down. Clearly, that’s what’s happened with JJ, but the good news is that she is likely still potentially savable.

More interestingly, Justice Edward has, with the cooperation of all parties involved in his original ruling, has walked back its broadness, its putting aboriginal rights and parental rights over the rights of the child to effective medical care:

The clarification of a controversial court ruling that allowed the mother of an 11-year-old First Nations girl to pull her out of chemotherapy says the best interests of the child are “paramount,” but traditional medicine must be respected.

It is a “significant qualification” of Ontario court Judge Gethin Edward’s November 2014 ruling, according to one legal expert, which means the child’s well-being has to be balanced against rights to traditional medicine.

Nick Bala, a law professor at Queen’s University, says the clarification “walks back” the original ruling that put First Nations constitutional rights as the major factor to be considered in the care of the child.

The clarification, read in a Brantford, Ont. court Friday afternoon, comes with news the child restarted chemotherapy in March when the cancer returned after a period of remission.

From my perspective, this is the sort of compromise that could have and should have been arrived at the first time around. Why it wasn’t, I still don’t understand. Regardless of my distaste for non-science-based treatments that will not affect the outcome of a patient’s cancer, if what it takes to get the parents to have JJ undergo effective chemotherapy that reportedly had about a 75% chance of eliminating her cancer for good, then I swallow hard and let it happen. Unfortunately, although I’m not a pediatric oncologist, JJ’s chances of long term survival are now probably significantly less than 75% because she didn’t continue her chemotherapy after the initial course put her into remission and has now relapsed.

It still irks me that the first time around the judge seemed to conflate Brian Clement’s quackery with aboriginal medicine in his decision in that his decision was that JJ’s family had the right to use aboriginal medicine, not that they had the right to fly to Florida and subject JJ to the quackery of a man whose wheatgrass enema treatments have about as much to do with aboriginal culture as Eminem. Yet almost no one that I saw from the aboriginal community actually pointed out that basic fact, so intent were they to claim this decision as a victory for native rights. The other thing that still irks me is how little consideration was given the first time around for the good of the child. All the highfalutin rhetoric notwithstanding, what the case came down to was the right of the child to effective medical care versus aboriginal rights and parental rights? Guess which one? It was the same as it almost always was: Parental rights trump the rights of the child in Canada, just as they almost always do here in the US. Only this time, there was the ugly history of oppression, particularly the history of residential schools to which aboriginal children were sent after being taken away from their families in order to assimilate them into Canadian culture, overlaid on the usual battle between parental rights and the rights of the child.

Still, at least JJ has a chance, and it’s better late than never, I suppose, that Justice Edward and other parties in the case other than McMaster Children’s Hospital and the Ontario Attorney-General finally realized that the JJ’s right to effective medical care matters enough to trump the right to choose quackery:

Bala called it a “significant clarification” that recognized the earlier decision had not referred to the child’s rights as being paramount.

He said this decision makes it more of a balancing act between the child’s best interests and aboriginal rights, and that courts “very rarely” clarify decisions.

“The aboriginal rights are one factor to be considered, but not the only factor,” Bala said. “This is a significant qualification of the prior decision.”

Paul Williams, the lawyer for the First Nations family, said the clarification prevented the previous ruling from being interpreted as an “absolute” that only aboriginal rights would be considered.

“The right to use traditional medicine is part of the child’s best interests. That was clarified, it wasn’t changed,” Williams said. “I think it was a fear of absolutism. I think it was clear that nothing was absolute.”

Well, duh. Justice Edward’s ruling was “interpreted” as an absolute that only aboriginal rights would be considered because that’s how it was written:

What Edward did was add a crucial “clarification,” on consent of all counsel, that indigenous does not take precedence over conventional and scientific. “Implicit in this decision is that recognition and implementation of the right to use traditional medicine must remain consistent with the principle that the best interests of the child remain paramount. The Aboriginal right to use traditional medicine must be respected and must be considered among other factors in any analysis of the best interests of the child, and whether the child is in need of protection.”

Edward had never stated, in November, that the family shouldn’t pursue chemo if they chose. But he did say they didn’t have to do so, a conclusion that sparked intense controversy.

Now Edward tells us that he always knew, instinctively, the parents would do what was best for J.J. He took that comforting view from the testimony of an intake manager with the Brant child welfare agency, in which she quoted the child’s mother as saying, “I will not let my baby die.”

Edward told court yesterday: “Implicit in those seven words was that, regardless of what this court said or did, or anyone else for that matter, what was paramount for the mother was what was in her daughter’s best interest.”

This is a manifestly dumb argument—one of the dumbest I’ve ever heard in a case like this. Virtually every mother who refuses chemotherapy for her child has the best interests of the child at heart. Every mother who refuses chemotherapy loves her child and wants her child to live. That’s not the point in cases like this. The point is that what the mother was doing was clearly not in the child’s best interest by any reasonable standard, no matter what her motivation might have been. Heck, parents who belong to religious orders that eschew all medical care to the point of allowing children die preventable deaths of diabetic ketoacidosis or treatable pneumonia believe they are doing what was in their children’s best interest. The end result is still dead children. If JJ’s parents and Edward hadn’t finally seen the light, that would have been the end result for JJ. It might still be.

Edward’s ruling was a ruling that delayed effective treatment for JJ for five months and allowed her cancer to relapse. Never mind that JJ wasn’t being treated by aboriginal healers at all, but rather a white quack from Florida! If JJ ultimately dies, it will have been the ruling that let that happen. After all, we’ve already seen what happened when a parent stuck with Brian Clement’s quackery to treat her daughter’s lymphoblastic leukemia. I’m referring, of course, to the case of Makayla Sault, whose mother took her to HHI and who died in January of her leukemia, very likely unnecessarily given that she had a good chance of long term survival with proper treatment. It’s a good thing that Justice Edward was given the opportunity to “walk back” his ruling. It’s not a good thing that it apparently took JJ’s relapse to do it.

But what of Brian Clement? As glad as I am that JJ now has a fighting chance, I don’t recall having mentioned the bad news about Brian Clement here on this blog. I was optimistic a couple of months ago when the State of Florida finally did something about HHI, ordering Brian Clement to stop practicing medicine. Unfortunately, it didn’t last long. By mid-March, the State of Florida had backed down, and dropped its case against Brian Clement, who is free to continue to ply his considerable quackery on unsuspecting desperate cancer patients, just as he had been doing for more than two decades before. Truly, Florida is a good place to be a quack.

No doubt Clement has already visited Canada again to try to recruit the next JJ and Makayla Sault.

Comments

  1. #1 Pris
    The Dark Side of the Force
    April 27, 2015

    And people wonder why I’m so angry at woosters.

  2. #2 Dangerous Bacon
    April 27, 2015

    I am grateful for this article, not least because its publication has dropped down the oversized photo of Dr. Oz to where I don’t have to see it when visiting RI.

  3. #3 SelenaWolf
    Ontario, Canada
    April 27, 2015

    “It still irks me that the first time around the judge seemed to conflate Brian Clement’s quackery with aboriginal medicine in his decision in that his decision was that JJ’s family had the right to use aboriginal medicine, not that they had the right to fly to Florida and subject JJ to the quackery of a man whose wheatgrass enema treatments have about as much to do with aboriginal culture as Eminem. ”

    This perplexed me mightily, as well.

  4. #4 MikeMa
    April 27, 2015

    No harm my ass. Clement is a monster.

  5. #5 sadmar
    conflatational
    April 27, 2015

    Judge Edward couldn’t really separate Clement from the aboriginal medicine issue, due to the way the case was brought. J.J’s parents claimed they were going to use Native Medicine, so McMaster cited ‘Native Medicine’ in it’s order of protection, and it’s appeal to the court, essentially conceding that however J.J. was being treated WAS ‘Native Medicine’. . This was the HOSPITAL putting politics over J.J.’s life, (though I can’t say how intentional it was in that). That is, McMaster sought a broad ruling that would force Children’s Services to take First Nations children into custody on the hospital’s say-so, essentially without oversight — the hospital wanted the whole Native Medicine argument declared illegitimate. AFAIK, McMaster made no attempt whatsoever to amend the complaint, but let it ride as an ‘Aboriginal Rights’ issue before Judge Edward, even though J. J. was at HHI during the proceedings!!

    Now, McMaster couldn’t have cited Clement specifically in its original request for protection, because they didn’t KNOW J.J. would be taken to HHI. But they might have GUESSED that would happen, given that Makayla had already taken that route. Had the hospital lawyers been smarter, less focused on Aboriginal Rights precedent, and more concerned with the individual kid at hand, they could have worded the request for protection differently. Basically, the case is ‘the child needs protection because the parents are refusing any and all proven medical treatments for a curable cancer’ PERIOD. It’s entirely irrelevant from a medical standpoint what the parents do instead: ancient rituals; whatever Brian Clement pulls out of his butt; watching ‘Keeping Up With The Kardashians’… If McMaster was going to cite the parents’ stated plans, the hospital coulld have said:
    ‘They told us they plan to use traditional medicine, but were told that before and the child wound up in Florida with a new-age quack. So the truth is we don’t know WHAT they’re going to do. Even if they claim its traditional, it might not be, and figuring that out is not our brief. All we know — all we need to know — is that with any other course of action other than the one the family is now refusing, a child with an excellent chance of having a long productive life is being doomed to an all but certain premature death.’

    But the hospital didn’t do that. They just HAD to put Aboriginal Medicine on the legal table…

    The article on the CBC site couldn’t be more poorly written or obfuscatory, so i have no clue how the amended ruling actually came about: who made the initiatives, how things were negotiated, whether other advisers influenced the parties, what concessions might have been mad or traded… Perhaps cooler heads were involved all around.

    The cause for celebration here is not so much the ‘clarification’, as important as it is. The whole custody issue is still a potential mess. The good news is that well before the decision was announced J.J.’s family had seen the light and put her back in chemo. Even following Makayla’s death, we all knew this wasn’t a no brainer, since the woo-spin would be (as was) ‘the chemo killed Makayla!’

    I’d like to know exactly how J.J.’s Mom was persuaded. I would guess (or maybe just like to think) that following Makayla’s death all the parties started thinking less about politics and more about the kid. I ‘d guess McMaster was kinder, gentler, much less paternaliistic and confrontational. But mainly, I’d guess the Six Nations elders were key – quietily urging the mom to put J.J. back in the hospital ON HER/THEIR TERMS, and working together with the hospital to ease the conflict. There’s no legal threat to rights if the parents WANT the kid in treatment, and with J.J. in treatment voluntarily, the parties could all talk about the ‘clatification’ with more ease.

    IANACL, but IMHOd the clarification doesn’t go far enough.On the one hand, the ruling is still way too fuzzy on what can or can’t be considered ‘aboriginal medicine.’ On the other, it doesn’t establish clear guidelines to protect First Nations children from spurious custody claims, for example by requiring a hospital to seek a mandated treatment plan before sending a protection request to Childrens Services.

    But hey, it’s progress! Get well, J. J.!

  6. #6 Sarah A
    April 27, 2015

    It’s nice to read some good news for a change – I hope J.J. makes it. Too bad Brian Clement didn’t get his come-uppance this time around, but hopefully poor Mikayla’s death and J.J.’s recurrence will warn off his future marks. If you google “Brain Clement” the first 3 hits are Orac’s articles here or at the not-so-super-secret other blog, so the info is out there for anyone who does even the most cursory research.

  7. #7 Kristina
    Just saw a real doctor for my kid.
    April 27, 2015

    (End of second paragraph)

    “These stories usually either end with some agreement being reached that allows the child…”

    Allows the child to what? I’m assuming it’s pursue woo instead of conventional treatment? Choose their own path perhaps?

    I’m not trying to nitpick, I promise, I am really curious how the typical story ends. I know Orac blogs about the regrettable decisions most often.

  8. #8 capnkrunch
    April 27, 2015

    Good for her parents. Admitting you’re wrong, especially about something like your child’s health has got to be terribly difficult. I think it’s important to not be excited about this or the court’s clarification (not that anyone here is) because at the end of the day a little girl’s cancer recurred. Very much a Pyrrhic victory.

    I’m also very interested in what it was that finally convinced them. It might give some good clues for how to handle these situations better.

  9. #9 Kiiri
    April 27, 2015

    Capnkrunch – I would imagine the straw that broke the camel’s back and turned the parents back to medicine might have been the failure of the ‘cure’ to materialize. Unfortunately as Orac points out, they might have blown their best shot on unicorn tears and fairy tales. That is what irks me. You see these stories time and again, the person leaves medical treatment for quack therapy (of whatever stripe floats their boat) and then when the cancer inevitably recurs, or drastically worsens, they end up running in desperation to ‘conventional’ medicine. Usually, it’s too late. I am wondering if Orac is going to have time to revisit Belle Gibson (I hope I got the name right) now that it is completely out in the open she’s a liar, liar, pants on fire who duped thousands of people for profit.

  10. #10 Kristina
    Waiting on results
    April 27, 2015

    “…that allows the child to pursue woo with conventional therapy.”

    Thanks! This does help.

  11. #11 jrkrideau
    At the bottom of the lake (the bottom end I mean)
    April 27, 2015

    @5 Sadmar

    “But the hospital didn’t do that. They just HAD to put Aboriginal Medicine on the legal table.”

    Possibly a turf war? Mac appears to already have two acupuncture programs and office space let alone funding may be short. Give Aboriginal Medicine a toe-hold and the next thing you know there’s a new program, people booting you out of your office and who knows what. 🙂

    I know nothing about these programs except the websites exist and, presumably, so do the groups. The internal politics in the Med Facility (or whatever it is called at Mac) must be fascinating.

    A posting in Skeptic North pointed out that there was a rather worrying amount of CAM in Canadian medical schools http://www.skepticnorth.com/2012/02/time-to-cut-funding-for-cam-education-in-medical-schools/ and mentioned one in Mac. I googled it and discovered that there seemed to be not one but two programs. Arrgh. It was rather shocking to see the number of Canadian medical schools with CAM courses or adjunct (??) clinics pitching woo.

    Contemporary Medical Acupuncture Program Welcome to the ORIGINAL McMaster University Contemporary Medical Acupuncture Program, http://mcmasteracupuncture.com/ Contemorary Medical Acupuncture Program

    McMaster University Medical Acupuncture Program An Evidence-Based Approach, McMaster University https://acupuncture.mcmaster.ca/

  12. #12 Michael5MacKay
    Toronto, Ontario, Canada, Eh.
    April 27, 2015

    I have two comments.

    First, Orac, the Makayla Sault situation went first. In Canada what would usually happen when a parent refuses live-saving medical treatment, is the local Children’s Aid Society would intervene to seek a court order giving it the authority to consent to the necessary treatment, which the court, without a great deal of difficulty, would grant. There is, IIRC, a Supreme Court of Canada decision involving a Jehovah’s Witness child who needed a blood transfusion, where the Supreme Court pointed out that the legislation – the Children’s Law Reform Act – required parents or their substitutes – act “in the best interests of the child.” Adults generally can refuse life-saving treatment but in Canada, until these two cases, children, uncontroversially, could not.

    In Makayla Sault’s case, the responsible Children’s Aid Society, declined to apply to the court to obtain the necessary authority to consent to medical treatment on Makayla’s behalf, so she was left to the tender mercies of the Hippocrates Institute in Florida.

    In JJ’s case, the hospital tried to prevent the same result, by essentially taking the Children’s Aid Society to court to force it to do its job. In his initial decision, Judge Edward concluded that a section of the Canadian Constitution requiring respect for aboriginal traditions that were an integral part of First Nation’s culture, and preceded European Colonization, trumped the “best interests of the child” requirement. It was a profoundly misguided decision. In Justice Edward’s defence, at the time of the hearing, JJ was already in Florida, and he had no power to order her return to Canada. I think the fact that he was not able to do anything, made it easier for him to pay lip-service to First Nations’ rights, as it had, at the time, no practical effect.

    Fortunately for everyone involved, I think, the parties to the original application, in their haste, forgot to notify Ontario’s Attorney General about the case, as is required in any constitutional challenge to Ontario law. This omission, allowed the Ontario Attorney General to threaten to apply to set aside the original order. I expect that time, changing circumstances, and a whole bunch of behind-the-scenes manouvering resulted the the most recent hearing, in which Judge Edward “clarified” his original ruling, on the consent of all the parties, to correctly assert that the “best interests of the child is the paramount concern of the law and the government agencies involved.

    If I weren’t an atheist, I would pray that this round of treatment cures JJ.

    Secondly, sadmar, I too ANACL, although I do have an LL.B. from a Canadian Law School, I have a slightly different take on the proceedings. It is impossible to know, without looking at the court record, how McMaster presented the case, and in particular, how, the aboriginal rights issue was raised. It is clear from Justice Edward’s original judgment that the evidentiary record left a lot to be desired.

    There is a section in the Canadian Constitution that acknowledges the existence of First Nations’ traditions that could conceivably, in some circumstances, trump the statutory requirement that the court require everyone to act “in the best interests of the child.” It is clear, however, from his original decision, that he went out on a pretty weak limb in reaching the conclusion that First Nations’ traditions applied in these circumstances. His reasons for decision cite no cogent evidence in support of that conclusion. As well, the right to follow those traditional practices certainly would not apply to whatever treatment JJ received in Florida.

    I haven’t read Justice Edward’s “clarification.” It should be posted online shortly, and when it is, I will read it carefully.

  13. #13 Orac
    April 27, 2015

    First, Orac, the Makayla Sault situation went first.

    FYI, I am quite aware of this, as you would know if you had clicked any of links to some of my copious previous blogging on the topic, for example, this post or this one.

  14. #14 sadmar
    Hearing Rush (the band) in my head...
    April 28, 2015

    @ jrkrideau
    McMaster’s venture into CAM may have put the oncology department on edge, but there’s no way the hospital would get into ‘Native Medicine’. For one thing, there’s no money in it. For another, the institutionalized Native Medicine programs in Canada are housed in government funded clinics serving First Nations communities, where the ‘traditional healing’ is treated as ‘genuine integretive treatment’ – which is to say they don’t go about claiming it can cure physiological diseases like cancer, and it’s mainly a tool to deal with the epidemics of depression and substance abuse that continue to plague First Nations people trying to adapt to the ways of a Eurocentric society that would indeed rather they just go off and die somewhere. But there could indeed have been all kinds of internal dynamics at work inside McMaster. I.e., not having seen a more detailed account, I wondered if the same attorney and administrators were speaking for the hospital, or whether there was some ‘change of horses’.

    @ Kiiri
    If Colonel Tom was still here, I’m sure he’d assert that J.J.’s family would not have made any decisions here alone, but only in consultation with, and assent of the band’s elders, who were probably influential in pushing them to what the capn notes could be a psychologically difficult reversal. The Six Nations have a matriarchal social structure, so the relevant elders are likely mom’s themselves — both protective of the other moms facing a custody challenge by the government, but also protective of kids placed in danger by questionable parental decisions. As with McMaster, much we will never know may have gone on behind the scenes. Once Judge Edward’s ruling was in place, though the band may have trumpeted faith in ‘Native Medicine’ to the public, I’d guess they knew full well Clement was a dangerous quack who had sucked in the family, and were trying to pull J.J.’s mom back to reality with gentle persuasion and smoothing the way for her to change her mind.

    I also wonder if someone like Wayne Spear got involved as a go-between helping the band and hospital communicate and find common interest in recovering what chances remain for J.J.

    @ Michael5MacKay
    The hospital’s application for protection is part of the public record, and referenced in the decision, so yes, I do know how the case was presented, and how the aboriginal rights issue got into the mix. McMaster may not have put Native Medicine on the table out of a conscious and calculated attempt to get a broad ruling in Makayla’s case. They may simply have been reflecting a variety of long-standing biases without thinking through the consequences. But when it came to J.J. they had no excuse whatsoever, as they KNEW from Makayla’s case what Brant FACS would do (nothing), and what the rationale for that decision would be (Native Medicine is an aboriginal right). Yet they took the same tactic with FACS they had with Makayla, instead of changing up the argument. When FACS totally predictably again did nothing, McMaster filed the court case — in which FACS was the only named party. Unless they’re abysmally stupid, they knew the court case would take long enough to resolve, and FACS had no practical ability to apprehend J.J., and thus were actually sacrificing her rather than trying to find a pragmatic path that could save her.

    in fact, (perhaps ironically, ask Alannis) J.J. most likely only has a chance now because Judge Edward ruled AGAINST McMaster. If he had ruled for the hospital, the family almost certainly would simply have stayed out of any jurisdiction where FACS could get at J.J.

    A number of Canadian legal experts noted Edward’s decision did not follow the applicable case law, which places ‘do no serious harm’ limits on aboriginal rights that should have applied here, no ifs, ands, of buts. The clarification appears to put that element back in order, greatly reducing the otherwise truly horrific impact of precedent. As the case was brought to Edward, it was ‘Native Medicine; yes or no?” I doubt he had the option to make it “HHI isn’t Native Medicine’ because THAT WAS NOT AT ALL ADDRESSED IN MCMASTERS COMPLAINT AGAINST FACS. Again, as this was their second go-round with Clement, it surely could have been.

    My guess would be that ‘continuity with pre-contact practice’ is a sort of judgement call that has to take into account how traditions evolve, and distinguish some evolutionary change from ‘new’ and actually ‘different’ practices. Thus, it COULD be argued Clement was only providing J.J. with an ‘evolved version’ of the plant-medicine and nutrition-based healing practices of the pre-contact Longhouse. McMaster might not have wanted to open that can of worms, perhaps with reason. The problem, again, was that as sbm practitioners, if they were going to file for protection (a very dubious move itself) all they should have done is address the absence of science, not the presence of anything else: ‘Without chemo, this kid will die.” The end.

  15. #15 Deb
    Oz
    April 28, 2015

    I’m so glad this has happened, and hopefully JJ’s treatment will be in time.

    I work with indigenous Australians, not Canadians, but the idea of a court or especially hospital (and definitely not internet commenters!) deciding what is Native Medicine makes my skin crawl. That decision can only be made by the affected indigenous community (depending on how they make their decisions).

    Having outsiders involved in that decision assumes a level of knowledge they just don’t have, and also that one snapshot in time is important, rather than seeing culture as dynamic and evolving. It sounds obvious when it is written like that, but most people’s gut reaction assumes indigenous culture was frozen at colonisation, and any change is ‘adulteration’ because of white people.

    My favourite simple example – Torres Strait Islander’s traditionally wore grass skirts. A dance troupe I know of began making their skirts from plastic shopping bags, because they came in green, white and blue. These are the colours on the TSI flag. They took a lot of flack from white people who thought it was such a pity that they didn’t do it in the traditional way any more. But they saw it as a natural way to use the new materials available to them to add a layer of symbolism that was important for their identity.

    I only know what I have read in the posts here about this case, but I am extremely thankful there was never a question of judging whether or not what was being done was Native Medicine. That would have gone into even murkier waters and could have derailed this relatively amicable ending. I just hope it is enough.

  16. #16 Narad
    April 28, 2015

    In Makayla Sault’s case, the responsible Children’s Aid Society, declined to apply to the court to obtain the necessary authority to consent to medical treatment on Makayla’s behalf, so she was left to the tender mercies of the Hippocrates Institute in Florida.

    In JJ’s case, the hospital tried to prevent the same result

    No, wait, this is a smearing of history. I’m about to turn in, but IIRC, Ms. Hill did not reside on tribal land when this got started.

  17. #17 Narad
    April 28, 2015

    ^ Which is to say, the two cases are importantly, qualitatively different, even if I have them reversed.

  18. #18 KayMarie
    April 28, 2015

    @Deb,

    I do understand that people will use current conditions and materials and adapt them in ways consistent with their cultural heritage and as long as that choosing comes from the culture itself I don’t think anyone has the right to say they just can’t pick that one.

    Now maybe their traditional healing methods and rituals were completely destroyed and there is actually no way to follow them, so they are allowed to adopt any one they see fit. I do think at least some attempt to connect the dots between their traditions or at least philosophies that survive with a completely modern and white culture quackery would be helpful (and maybe it is racism that says if their totem animal told them we’d believe it is of their culture but not when Jesus did). But it seems that perhaps in this case it wasn’t that they went out and looked at all the modern alternatives from all other cultures and picked one that was most in line with who they are as people, but that it doesn’t feel much different from the missionaries coming in and destroying native religions and replacing it with Christianity. It feels more like once again some white dude came in and replaces whatever remained of their culture with his own cultural baggage.

    At least for me it feels more shady on his part than on the native culture, and maybe it wasn’t just one more white dude taking advantage of people who have centuries of that kind of abuse and a reasoned and deliberate decision on their part to choose a modern stand in for their lost traditions.

  19. #19 Deb
    Oz
    April 28, 2015

    @KayMarie I agree, I have no time at all for Clements and think he’s a total con man. But what you, or I, or the hospital might think is irrelevant – the band gets to decide on their own culture, not us. I’m glad that the really important point – his woo does. not. work and JJ could die – didn’t get obscured behind ‘you don’t get to tell me what my culture is.’

    Indigenous cultures are rewarding to work with, but such a minefield. It’s so complicated because it’s a completely different way of thinking, with different definitions of success. It’s a bit like some religions that would rather die than lose their purity, but even that is in terms we can understand. It’s more like a complete incomprehension that it would be possible to live after that. That’s a very generalised example!

    I’ve been doing this for fifteen years and know I still really struggle to get it. We are making judgment calls all the time, not life and death, but quality of life (and I don’t get to determine what is quality). I’ve seen how horribly easy it is for people with good intentions to completely f@ck it up.

    Indigenous peoples have had so much taken from them, and every time we go on a noble savage trip we take a bit more. I’m so grateful that this case avoided that, because it could have had a much worse outcome.

  20. #20 KayMarie
    April 28, 2015

    I may be wrong but this so much feels like one more time the white man took advantage of a tribe and took them further away from their culture and truth rather than something that came from an empowered tribe seeking to do the best it can with what remains and incorporate that which will strengthen and sustain them.

    I don’t know that this will lead to actual empowerment or just end up being one more time they were lead down a path by those who care more about their own profit and ego than what the group they take advantage of really wants or needs.

  21. […] Cassandra C, and, most recently, two aboriginal girls from Canada, Makayla Sault (who died) and JJ (who will, hopefully, live, although her chances of ultimately surviving were greatly compromised by her mother’s […]

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