21 April 2015

The Cult of Science

"I have faith in science"

I wince every time I see that. It's usually people with a university degree, or part of one, in a science or social science. They like things that can be proven to them. They dislike anything that requires faith. Which is funny, given how very little of science they understand. And that's not an insult, that's fact. Almost no one is well-versed in all the areas of science. So they believe the latest scientific findings as if it's fact, not just the best information we have right now. And anyone who doesn't buy the findings is clearly stupid, deluded, or a quack.

And it drives me crazy. My husband is a scientist. He's the first to say, "Look at the money. Look who is funding the study. If the outcome of the study directly benefits the people paying for the study, it's not worth a damn. It may or may not be valid, but you cannot know how the data was 'massaged'" So when a study comes out showing that the MMR is unconnected to Autism, I looked to see who funded the study. The Lewin Group. Hmm, never heard of them. So I look them up. Oh, they're owned by UnitedHealth Group, who profit from vaccines. Does that mean that there is a connection? Hell no. Does it mean they're covering something up? I have no idea. But what I do know is not a thing more than I knew before. Because this proves nothing.

Anyway, only one of my kids had the MMR and I don't think it was a problem (but our doctors advised against further vaccines for other reasons, and fuck you straight to hell if you think I should vaccinate them anyway because of your fear). I'm not invested in believing the MMR causes autism. But I'm not going to jump into the cult of science either.

And why do I call it a cult? Because anyone who questions or disbelieves is shunned. Sometimes even if they're scientists too. They're mocked, belittled, and generally run out of the place. Their opinions are rendered garbage because even if they have personal experience if the current understanding of science doesn't back them up, they're completely ignored and marginalized.

And I ask, when does alternative medicine become standard? When MDs prescribe it? When it's proven to work for an arbitrary number of people? When that can be shown in a clinical study? And how does that ever begin to happen if people aren't trying new things? Suppose Dr N, MD is using a standard drug off-label. There's no evidence to back up what she's doing, but other doctors have mentioned that as a side effect of it, this other thing improves, and so they start doing it off-label. Totally not proven, not evidence-based medicine. But it's an MD doing it, so the cult seems to be okay with this, and maybe someone writes an article saying how it worked, and then someone finds the money for the double-blind study that shows it works in a group of people. Woohoo! They proved it and are vindicated. But what if the study shows it doesn't work, but the doctor keeps seeing results? Quackery? Or a flawed study that didn't control for certain factors, likely because they didn't have enough information to control for them.

Take a proper representative sample of human beings, put them in the sun for an hour. If only 8% of them turn red, and you don't know about the existence of melanin, you can safely conclude that the sun does not cause skin to turn red. It's the same for much of medicine. I heard the pharmacist say to the customer in front of me, "This is a very old drug. It's been around for about 70 years. We have no idea how it works for [what he had], but it works very well for high blood pressure. This is considered a side effect in some cases."

Over and over, studies are refuted by people who just can't believe the outcomes of other studies. That is how science works. That's what really infuriates me about the whole thing. A good study should be reproducible and falsifiable. And people should try. That's how progress is made. If everyone jumped on every study as the newest fact, no one would ever question. And it's up to more than scientists to do the questioning. If macrodantin makes me pass out every time I take it, and the doctor tells me that's impossible, do I keep taking it? Would you? I get to decide what to do with my body, even if it violates the current scientific understanding. And yeah, you get to mock me for it. If you're an asshole.

A 17 year old girl in Sudbury was given a 1 in 3 chance to survive her cancer if she did chemo. She turned it down to try something else, a naturopathic treatment. And people are mad at her and really mad at the "quacks" who would take advantage of her. First, that's massively disrespectful of this girl and her decision making powers. She's likely going to die in a few months, and pardon the fuck out of her if she'd like to do it on her terms. But she has the audacity to not go with the status quo, and normally decent people are flipping their shit that she shouldn't get a red fucking cent. Because science.

Science offered her 1 in 3 of remission. Plus really really nasty side effects the whole time. I don't know which treatment she went for. Maybe one of pure quackery, maybe one that in 10 years will be the next thing (like cannabis was 10 years ago). Who the hell knows? Maybe it'll be a placebo. I don't care. Let her have it. What's a placebo anyway? A fake drug that tricks the body into feeling better. Great! She gets to feel better. Where's the harm in that? It'll give others hope in things that don't work? That's the argument? Someone has to be the one doing the work at the ground level, and if it's her volunteering, you should fucking applaud and give her $25. I did.

Science is awesome. Wonderful. Beautiful. It's given us antibiotics (remember how Pasteur was a quack until he wasn't?), anti-virals, organ transplants, lunar landings, plastics, canned food, iodized salt, and all those great things. I'm not anti-science (p.s. no one is. That's about as stupid as saying pro-abortion). In fact, I'm for experimenting outside the lines of conventional science because I'm not stupid enough to believe every word that comes out of scientific journals. Those things are refuted regularly, often flawed and often biased. If echinacea works when I take it (it doesn't, I'm allergic to it, but go with the idea), I'm going to fucking take it. If macrodantin makes me pass out when I take it, I'm not going to fucking take it. Even if science says otherwise.

I'm not saying everyone should sign up for reiki (though at least that one doesn't hurt anyone) or buy chlorine dioxide enemas (please don't), or any other alternative treatment. But next time you take a drug off label, remind yourself that it's no different from trying magnesium for seizures. You're taking a medicine based on the observations other people have. And that's pretty much what alternative medicine is. Treatment based on the observation of others. Hell, it's how Viagra was invented.

14 April 2015

Faith, religion and politics

I've got two ideas for posts rumbling around in my brain right now, and they're kind of connected, but I'm not entirely sure how. Bear with me. Or don't. I don't care. :)

As you likely know, churches are tax exempt. This is ostensibly because income that churches make is from their congregation and is meant to serve the community, so taxing it doesn't make sense. Why would you tax something whose sole purpose is to benefit the community. That said, there aren't any regulations on the spending of that money, and the church itself gets to decide what is a benefit to the community. Are anti-abortion protests a benefit to the community? Of course not, I say. Of course yes, say the Catholics. And what about the American mega-churches whose pastors can be paid hundreds of thousands per year, and their outreach is negligible? What of the churches who pretty clearly preach a political ideology? Do any not?

I've heard people saying religion needs to stay the fuck out of politics. Not possible. Literally impossible. Because religion doesn't exist in a vacuum. Our religious beliefs inform our politics. And they should. If my interpretation of my religious scriptures tell me that I must feed the hungry and heal the sick, my only option to make that happen outside my own personal sphere is political. I must vote for those who would do that. If my religious beliefs include a love of all people, I must vote for those who would not legalize or keep legal discrimination against those people. If my religion teaches a profound love and respect for the planet, I can't very well go voting for the party who would destroy the land for profit. And furthermore, if I were the minister, preaching the sermon each week, making the scripture relevant to what is going on today is going to be inherently political.

I have never, ever, heard a minister overtly tell me which party to vote for. I have heard "vote with your heart, not your wallet", "remember when you vote that the planet was God's gift to us, to live in harmony with, but not destroy", "God loves. Just loves. No exceptions. EVER. Remember that when you vote".

Yes, I know that some do get more overt than that. A clergy member who is a neighbour of mine sent me an email saying "Our Prime Minister needs our help", asking me (and the rest of his email list) to help out Stevil on something. I fired back a retort about how we need HIS help, and if we ever got it, he wouldn't need ours. I'm off the mass-email list. And yeah, I think that's crossing the line. Big time. I'm not sure how to crack down on that.

Churches are charities. They are bound to the same rules as charities. I'm good with that, except that I think there should be tighter rules on spending. Churches and other charities should be required to spend a certain amount of their income on actual outreach, helping people in some way. And there should be a salary cap on each paid employee. Most decent churches would not have a problem. The ones who would are the ones who are barely afloat. Two things could mitigate their situation: 1) Volunteer work in lieu; 2) lower the percentage on churches/charities with incomes under a certain amount.

Trying to cut politics out of religion just isn't possible. I can't even imagine what a sermon would be, if there were no politics. Bible study? A dubious "history" lesson? Church is where I learned about the solar energy project at the T'sou-ke First Nation and about the Ancient Forest Alliance. Sure, I could have learned about it anywhere, but I got a theological perspective on the preservation of the earth out of it that I wouldn't have gotten elsewhere.

And that was the second thing. A theological perspective of environmentalism. The minister talked about the creation stories (and made very clear that they were stories, not history) and what they meant to him as a Christian. Myth can hold a lot of truth without having a lot of facts. He taught that God gave us the earth as a gift, a living gift to love and treasure, not to have dominion over. I'm not entirely sure I agree with that. I'm more of a panetheist than that. I'd say that God permeates the earth. When we destroy the earth, we disrespect God. Destroy God? I don't know. But I do truly believe that we do not own the earth, we are part of it. And that as Christians, we are bound to preserve it.

And our ministers, our pastors, our preachers? Their job is to teach us, lead us, and set an example for us. They must preach conservation. Kindness. That the poor deserve respect. That all people deserve food, water, medicine, shelter, clothing, regardless of their incomes. That all human life has value. That the death penalty is immoral. All those things are political statements.

Paraphrasing a sermon I once heard: If politics and faith don't mix, there is something seriously anemic about our faith, or something seriously suspect about our politics.  Vote for the candidate or party who can do the most for your neighbour. Jesus told us to love our neighbour as ourselves. So think about your neighbour when you vote.

p.s. Just read that the minister at my church said of Crusty Clark: Forgive her Lord, for she knows not what she tweets. LOL.

03 April 2015

Good Friday

Good Friday to you. Good Good Friday? I dunno.

Good (i.e. Holy) Friday is the day that Christians commemorate the death of Jesus. Some of us think it happened as read. Some of us think there's truth in the story, but the story is not exactly true. As usual, I fall into the latter camp. I really think that taking the Bible as literal truth misses the vast majority of the message. Jesus was their hope. He was their plan for the future. And then he was gone. Hope was dead. A gut punch.

Ever feel like that? I kinda felt like that when Harper got his majority. And when Clark won the last election here in BC. Good God did I ever drink a lot that night. I think I drank two bottles of wine. And it wasn't sacramental wine. :) Because I was expecting she'd lose. I got my hopes up high (where they belong, I might add) that we'd get a new regime. A kinder, gentler one. We didn't. We got people who think the poor are lazy or stupid. We got people who think minimum wage shouldn't pay the very modest bills. We got people who can't understand why disabled people don't work more. And I was heartbroken.

A friend of mine suddenly lost her beloved almost 3 weeks ago. She knows the gut punch feeling better than anyone I know. She's grieving for the loss of all the time they expected to have together. She doesn't know how she'll ever climb out of the darkness. She will, because she's strong. But it won't be easy.

It's never easy. That wasn't the deal. Jesus didn't say it would be easy. Simple, yes. Easy, no.

And that's where we're at now. Trying to make our way without decent leadership. Without a strong, vibrant, healthy church (I don't think that's ever existed, somehow). 2000 odd years gone, and we still can't remember the basic idea is to love. Just love. Nothing more. That's the rule. And yet, in many places, we use the name of God to hate. That's the 1st commandment broken, btw. It didn't mean don't shout "goddamn it". It meant don't use God's name to promote your own agenda. Indiana passed a law allowing people to hate gay people so much that they can kick them out of their businesses, and they did it in God's name. It's quite literally nauseating to me that they do this.

And I don't fucking care what Paul said. Paul was not Jesus. Remember how often the apostles got it wrong, and Jesus had to tell them "DUDES. No. Let the kids come to me" Or, "DUDES. The guy in the tree just wants to talk to me. He's allowed." Or "DUDES. The lady who touched me didn't sully me. I healed her. Actually, no. Her faith healed her." And those were his buddies. I'm supposed to believe Paul (who by most scholars' accounts was more than one dude) was always correct in everything he said? Are you shitting me? Hell no.

I have to remember Easter. That hope will never die. That evil may have the upper hand, but it will never have the last word.

01 April 2015

What do we want? EVERYTHING!

Yesterday, I wrote about Autism Awareness. Today, I want to talk about what we need, as caregivers of people who are autistic:

Money. OMG, we need more money. Our blessed government gives us a significant tax break, and that really does help a family who makes a good living. It doesn't do much for those in the lower income brackets though. How they manage, I couldn't begin to imagine. And near as I can tell, BC is the best province to be in when it comes to autism. We get money we can access semi-directly (bureaucratic layer) to hire people to work with our kids, pretty much however we see fit. That's great, but once they turn six, it's only $6000/yr. $500/mo doesn't go far when the behaviour consultants all charge between $100 and $120/hr. I don't bother with them any more. I wonder who else doesn't. Speech therapy? Same. Occupational therapy? Slightly less, but not much. It's gone in seconds. I figure we shell out, from our own pocket, about $15,000 per year. And you know what? I could spend FAR more getting them proper treatment.

Compassion. OMG, we need more compassion. The next time you see a kid having a temper tantrum in a grocery store, assume he has autism instead of assuming his mother is a shitty parent. Even if she's standing there, reading a label while he screams. ESPECIALLY if she's standing there reading a label while he screams. Staring doesn't help. Smiles do.

Research. Yes, please, keep researching the causes, but better yet, work on treatments. No, I didn't say cures. I said treatments. Things like B12 therapy that work so well for some. Amantadine is a wonder drug for some. ADHD drugs work really well for others. Some do well on lamotrigine. I don't want drugs so that these people can be "drugged into submission", but rather to take the edge off of the compulsions or the sensory overload. So they can learn things and have conversations. Even if they're by iPad or letter board. Nothin' wrong with that!

Gender neutral toilets. Listen, my kid is only 9, and I live in a tolerant city. But when he's 13 or so, I'm going to start having a hard time taking him to the bathroom in public, and no, he can't go on his own. Please please please, gender neutral bathrooms like this one (at my church, of all places!)

Understanding. This goes along with compassion, but it's not quite the same. Yeah, I have different issues as a parent, and my kids have different issues as kids (and will as adults too), but that doesn't make it a tragedy. Don't say, "I'm sorry" if someone tells you their kid has autism. Please. I know it's hard to know what to say, so how about trying, "That should give you some interesting challenges!" with a big smile. :) My kids aren't a tragedy. Their autism isn't a tragedy. They're different. They have different issues, many of which need a LOT of extra help, but they're people. Full people.

PEOPLE WITH AUTISM, AUTISTIC PEOPLE, ARE PEOPLE. This shouldn't be a huge leap for people, but it seems to be. They are full people, with feelings, with opinions, with thoughts, with intelligence. Same as you and me. Sometimes they're right. Sometimes they're wrong. Sometimes they're lovely wonderful people. Sometimes they're assholes. Sometimes they're compassionate. Sometimes they're rude. JUST LIKE EVERYONE ELSE.