how do we know what we know is true,  science

parenthood & choices, in my own life and in news stories

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For four days I haven’t had the energy to read anything harder than a novel or write anything at all. I was very physically active during that time, walking more than normal helping my kids rebuild their fort, and getting started on the garden. Emotionally the hard part was helping my children deal with their anger at the neighbouring children who had knocked their fort down, particularly when I was angry myself. I was angry not so much at the knocking down of the fort, but at one neighbouring child’s insistence on denying his involvement even when we had evidence he had been involved. One question one of my children asked me stands out for me: “why does ____’s parents believe him when he lies so often?” In the past his lies have sometimes involved blaming my son from things he hadn’t done, and I’ve struggled with trying to take seriously the possibility that the other child might be telling the truth, and my own son lying. And so the other day had to talk about that challenge, the difficulty for parents in wanting to support their children and at the same time wanting to hold their children responsible for bad behavior. I thought of a child I had known once long ago who had for years been blamed of a crime he was later exonerated of. If parents don’t support their children who will? And yet, we need to deal with the wrongs too.

I have been reading bits of news stories – frivolous stories, stories irrelevant in many ways to all of us not involved but ones that catch our interest anyway because we’re human. One of the stories is that of Sonya, a nine year old in the states who was taken by her babysitter (her father’s best friend’s wife) to a different state and then separated from her babysitter and claimed as an abandoned child. The father was caught by a three-strikes-you’re-out law and sentenced to prison for something to do with gun possession so the child ended up in the Tennessee foster care system, temporarily adopted by the people she was staying with but then with the adoption voided because her father’s rights hadn’t been properly terminated. The Tennessee foster care system seems to have tried half-heartedly to reunite her with her family. Somewhere I read that every time her grandmother called her, she was denied the chance to talk, and it seemed to have come to her by surprise when the court finally demanded she be returned to her father. A probably coached phone call about mold and a lack of clean water was recorded before the foster care system demanded her now-ex-foster-family have no more communication with her but they’ve got a media team (the same media team involved in ripping Veronica Brown away from her father) and are all over the news. This past week apparently Sonya’s lawyer said that she doesn’t want to return to her foster family but would like to be able to visit them as a guest, but it was also said in court that there should perhaps be a restraining order on the foster family to get them to try to quit their media harassment. The foster-family that argued her original desire not to be handed over to strangers is reason for her to be left to them rejects the idea that her current desire matter. They viewed her capable of making her own decision then when she was with them and told only one portion of the truth but not capable of it now that she has had some time living with her father (and obtaining therapy).

Another news story that caught my eye is one about a ten year old, Makayla, who wants to stop chemotherapy against the doctors recommendations. She had a vision of Jesus that told her she’s cured. Her family wants her to use traditional first nations cures instead of chemotherapy, and first nations people are rallying around her telling the children’s aid society not to get involved and force the chemotherapy. I know that way too many native children have been taken into foster care and that the first nations should be allowed to govern themselves, but I still have mixed feelings about this. If they were of any other ethnic background they would not be allowed to deny their child lifesaving medical treatment. Does not a first nation’s child deserve the same sort of protection from medical misinformation that a non-native child receives? Her family uses modern western medicine in other circumstances, it appears (she was diagnosed and started on treatment) so only using “traditional healing methods” can hardly be said to be integral to their life and identity, so what about being native makes it okay to encourage your child to neglect medical care and risk death on untested herbs and prayers?

I get the sense that some of the people interviewed in the articles are trying to defend not just native political sovereignty (which I do support) but traditional native ways of knowing as well, trying to claim it as equal and independent of western society. Dawn Martin-Hill, one of two researchers funded by the Canadian Institutes of Health Research to study indigenous medicine, is quoted saying: “We will never ever have enough studies done to prove anything to the medical establishment. We don’t need to prove to the world that the medicine works. We know it works. The evidence base is in the community.” I have to wonder if any of that evidence is specific to leukemia.

Despite the mention in news stories about Makayla’s vision of Jesus, and Dawn Martin-Hill’s insistence that the issue is one of native rights and not religion, I can’t help wondering if the issue is just straightforward fear. Watching a child go through the suffering that Makayla went through on chemotherapy would be horrifying and the desire to deny the potential for death and put one’s hope in something that promises pain-free treatment must be overwhelming. In comment sections about the child there are an abundance of references to all different “treatments” most of which have been shown to be fraudulent (read Respectful Insolence to learn more about them). There is a lot of pushback against chemotherapy, and western medicine. People complain both that the medicines used are not tested enough for long-term effect and that researchers are holding back untested cures. I know there is widespread distrust against medicine and chemotherapy in particular. I remember going through a phase as a teenager where I read books about alternative healing methods and I said that if I ever got cancer I wouldn’t want chemo but would take my chances with nutritional and alternative healing methods. I look back at that time as part of my teenage rebellion, and I recognize now that there are so many dedicated scientists working to figure out the best, most effective treatments. My husband is a cancer researcher.

The comment I thought most persuasive was someone saying that when his sister died of Leukemia back years ago his family would have done anything for even a 50/50 chance of survival, and that he regrets not being able to introduce his kids to her or meet the kids she might have had, and that a person doesn’t realize how much they’ve lost until it is gone.

Is informed consent possible if a person believes in alternative medicine? Can a person give informed consent to forgo treatment if they believe that an unproven alternative will cure them, and thus they do not believe they are consenting to death? I wrote about this question almost a fortnight ago. People have freedom even in ignorance and “informed” means different things to different people.

The parents and community are making a big show about the girl’s decision to forgo the chemotherapy. The mother is quoted as saying “To see our daughter walk a path she’s called to walk, we stand with her and we support her 100 per cent.” I wish the situation could have been kept quieter, privater, so that she would have had the possibility of choosing to change her mind easier. But I suppose that is part of why they went public with it – that, and fear of CAS. Is it ethical for those who would fight for native sovereignty to be turning this situation into a case for it, calling her brave an thus further distancing her from the possibility of changing her mind?

I know two years of chemotherapy sounds like a daunting prospect. I cannot imagine how hard it would be and I fault the hospital (and community) for not doing more to help the family cope with the emotional strain. I fault the parents for not doing more to prepare the girl for the suffering and for not helping her find a way to follow through with the painful treatment.

There was another native child with the same disease who was forced to undergo chemotherapy in 2008 and his family says the forced chemotherapy wrecked his mind and body: His stepmother said: “He’s angry at the system. He feels the system failed him. It made him rage against the machine.” Reading that I cannot help think, where was his family to help him accept the chemotherapy? Why let it become a thing where it is individual against “the system.”

Is preparing one’s children and helping them cope with disaster not a part of parenthood? The tragedy in the case of Sonya, the nine year old taken away from her foster parents, is that the foster parents did not take the time to prepare her for the separation but instead insisted that she was their daughter and that they would fight to the end to keep her. Why could they not, as soon as they realized she was not available for adoption, start fostering a relationship between her and her extended family? Why not allow her grandmother to speak to her on the phone? Why not encourage her to correspond with her father while he was in prison? For them too they are using the media to attempt to bring about the solution they want but at the same time it ends up working against a compromise, against the possibility of the two sides working together.

To bury one’s head in the sand, to persist that God will save you or prevent bad things from happening doesn’t work. To rally others around to support one’s view does not necessarily make it right. Information that we believe is true may turn out to be false. It is a strange, difficult path that everyone walks trying to figure out how to deal with limited information, with our own emotions and with trying to teach our children.

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