Friday, November 15, 2013

Friends, family, everyone else; read carefully, take heed

I have often wondered why Bob and Suzanne Wright chose the name "Autism Speaks" when that so-called charitable organization was founded in 2005, the name would suggest that we are unable to speak for ourselves. Maybe it was not unintentional, but probably was the the core idea.

At this point, I do not want to judge anyone on the autism spectrum who does associate with or receive services from them (whatever those services are), but a long-running complaint against them was the lack of representation of actual autistic people, either employed by them or on their board of directors (even in an advisory role). Being someone who is currently (and proudly) the Nova Scotia representative of the Advisory Committee of the Autism Society of Canada, I did not want to put anyone on the spectrum in a "Catch 22" situation who is currently employed by Autism Speaks or any of their chapters (I wanted to give them the benefit of the doubt that they are trying to steer them to a righteous path). As much as I disliked 'Autism Speaks' since their inception, I still held out some hope for them, that they would acknowledge their scientific and ethical mistakes and atone for them. (What's Wrong With Autism Speaks? Let her count the ways). But as of this week, I have abandoned all hope for them, they are dead to me.

While they do use some of their donations to fund scientific studies, their overall purpose seems to be to eradicate, or 'cure' autism, and funded medical studies towards that dubious end. But they have descended into a scientific and moral basement, when they gave an endorsement for the Judge Rotenberg Center in Canton, Massachusetts (brief wiki here). At an upcoming Walk Now for Autism function in Washington, D.C., they have listed the JRC as a 'service' and given them a booth at a resource fair planned for that day (explained at length by Autistic Hoya). As a result of this decision, John Elder Robison has announced his resignation from a couple of boards of Autism Speaks, and explains his decision quite thoroughly.

So in short, if you want to remain on my good side (and you know you do >:-), you should not give any acknowledgement to that particular outfit, and if you should run into a representative of Autism Speaks, tell them to take their puzzle pieces and shove 'em.

P.S. An acknowledgement of gratitude to Jenny McCarthy, from a 31 year-old woman with pertussis.

Thursday, October 03, 2013

Happy (admittedly belated) Blasphemy Day!

One of the great things about living in Canada is that you can be accused of saying something blasphemous and not be arrested for it (a slight chance of getting assaulted if you insult the wrong religion, but still slight). I am not an atheist, but also not easily offended. I would like to think that most of the Western world is the same way, but if enough religious people get worked up enough, nowhere is safe, in what should be free societies.

I just stumbled onto something, Canada actually does have a blasphemy law. One can only assume that it is dated from around the time Canada became a country, maybe even before that. Most European countries likely had blasphemy laws dating back to the Middle Ages, were meant only for Christian religions, and may still have them on the books. However, like Canada, most of them have never gotten around to repealing them or saw any urgent need to do so. They all may want to consider doing so, because the people who want to prosecute others with these laws are not likely to be Christian anymore.

Back to my original point, this sort of thing needs to be dealt with clearly and resolutely. No minority (or non-minority) should assume that their own laws (religious laws particularly) apply abroad. I still like the idea of multiculturalism but it is one of those good ideas that ultimately goes too far. There should be some set boundaries as to what concessions we should make, and they should be expected to give up some things in their new country. The main idea behind it is "give and take" and not to move in and "try to take charge of the entire sandbox".

Just sayin'.

Tuesday, September 03, 2013

A Chronicle of Murder

From what I gathered without seeing it, it was like a documentary of a murder that you just knew was going to happen if you followed that horrible blog 'Age of Autism' like I used to. I used to follow it on Google Reader when I was working and researching for Autistics Aloud, but I stopped following 'AoA' and writing about the discredited 'vaccines cause autism' garbage because I believed that it would diminish and eventually become a non-issue if people like me stopped talking about it, and we could go on to more relevant issues. I was mistaken, it is still an issue because enough people still cling to it, and this pseudoscience may still be gaining wider acceptance among conspiracy theorists who allege a coverup with government and Big Pharma.

But most of all, it is an issue because a young man is dead. His name is Alex Spourdalakis, fourteen years old, and he was murdered by his mother and godmother. On the surface, it could appear to be a case of 'caregiver fatigue', not that it would be an excuse by any means. He was a non-verbal autistic boy, and it turned out that he was being treated with 'alternative medicine', or 'autism biomed' in an attempt to 'cure' him of autism. He was sick, and apparently getting sicker, but it was because of the side effects of the medical quackery that was trying to 'cure' him of autism.

They had all kinds of help with their 'alternative medicine' from people like CBS reporter Sharyl Attkisson, who recently made a report (video available as of this writing) and herself has had a history of unethical reporting and advocating for bad science. In this case, the report gets too close to the subject matter (tries to make you feel sorry for the caregivers) and advertises a website on YouTube called "The Autism Media Channel" which is run by anti-autism advocate Polly Tommey and frequently features Andrew Wakefield and his junk science.

I could make a case about the deplorable state of journalism here in Canada and the U.S., but that would be more appropriate for another post. The bottom line here is that a boy is dead, and was killed by a lethal combination of bad medicine and ableism. His mother and godmother thought basically that he was better off dead than autistic. This was documented over a period of time, and we can only hope that it adds up to a conviction of first-degree murder and all that entails.

Sunday, August 18, 2013

W(h)ither Blossom?

Say it ain't so, Mayim. It seems that this woman who plays an über-geek in one of the few TV shows I watch faithfully anymore, (unlike her fellow actors, it's not really 'acting' for her) is betraying science. This article at skepticalraptor.com makes some fascinating comparisons with her and Jenny McCarthy, who will be able to spread her deadly anti-vaccination quackery to a much wider audience on ABC's 'The View'.

Except in Bialik's case, she does have a PhD. and is a scientist in real life, which gives her some real credibility, but her scientific credibility flies south with her apparent embracing of McCarthy's anti-vaccination stance and homeopathy.

It's hard to say what's worse, someone with no scientific credentials spouting junk science to a wide audience, or an actual scientist who has done great work giving credibility to the same junk science who has a smaller following of intelligent, educated people who ought to know better but a few of whom might fall for this dangerous way of thinking, and spread it to other people as well.

Still on the subject of bad science, here is a listing of the 10 worst anti-science websites from another 'skeptical' website. Some of which you may well be familiar with (the Huffington Post makes no. 10), some you may dismiss at the outset as conspiracy mongering (911truth dot org for one), and others that dismiss science (Answers in Genesis). The list covers left and right on the political spectrum, so no one should feel left out.

Got Oranges?

I just can't imagine life without them. From what I've seen of this years crop, there is something seriously wrong. This may make you want to consider using genetically-modified organisms. Mainstream science does accept them, even if there are no long-term studies because this is relatively new science.

Now before anyone screams 'MONSANTO!!!', let me assure you that I am no fan of theirs either. If there should be any labeling, they should say whether they have been in any way processed by any product made my Monsanto, GMO or not. The hysteria around 'frankenfoods' may well have been overhyped, but we will not know for sure unless we try, or spend the rest of our lives without O.J. with our breakfast.

Friday, July 26, 2013

Stick to what you know

First of all, I like rap. I also like country music. I like most genres of music that I have heard, but I don't think that I have a favourite. There is a lot of great music which I will never hear, or like. That's just me and my personal tastes. I bought a rap record second hand in the late '80s, 'Raising Hell' by Run-DMC, because it had the version of 'Walk This Way' that I had become more familiar with, and ended up liking it better than the original (the entire album, pretty good). Having established that, I could never get into 'gangsta' rap, with its violent, misogynistic lyrics, and the near-constant ingratiating (is that the right word?) references to themselves by name and all the 'bling' they have. 

As for the recent controversy with Drake, I did not hear the song, I just read the lyrics. Yes, I was taken aback, but I did not take it personally. Ignorance abounds, I have long accepted that. Not to be politically correct here, but this sort of thing should be nipped in the bud early, because this could contribute to problems already experienced by people with disabilities, or start a dangerous new trend (I have always thought that that episode of "South Park" which had 'Kick a Ginger Day' unwittingly did just that). 

His and J Cole's apology does not change my opinion of him (If you feel the need to apologize to Autism Speaks, you have definitely done something wrong). He still doesn't get it, but it is too soon to expect a change of attitude. I will not hold it against him, I have always had a bigger problem with people who actually know autistic people and try to 'help' us. (more examples here and here [FB]).

Peace out.

Sunday, June 16, 2013

A Lost Cause

The start of my activism in autism-related issues began in the middle of 2005 when I conceived of my newsletter (which gave up to someone else for a while before I took it over again this year) when I picked up a copy of RollingStone that had an article in it by Robert Fitzgerald Kennedy Jr. (the infamous "Deadly Immunity", no link). I did not know what to make of it at first, but that was before I had weighed the issues and developed an understanding how science works (these two posts help explain what I'm talking about).

Well, eight years later, he's still at it. And he's doubling down on his Big Pharma conspiracy theories. Yes, they're all out to get us. This is bad science from a liberal perspective, and he's far from alone in this. People are listening, withholding vaccines from their children (the unfounded fear of getting autism being just one reason), and they are all paying the price for it. Certain diseases may come back stronger than ever, and still people like RFK Jr. won't believe that they themselves are the cause of the suffering and death that have happened and most likely will happen if his way of thinking is still taken seriously by too many gullible people.

Monday, February 18, 2013

Exceptionalism vs. anti-Americanism

This article in the Guardian shows a couple of tweets from a transplanted Brit, a Charles C.W. Cooke, who responds (links in the update section). It appears to me that they were both expanding each other's positions ad absurdum, but such is currently the relationship between certain groups in the United States, and the rest of the world.

While there was an excessive amount of anti-Americanism in the world, and an excessive amount of American exceptionalism during and after the Cold War, there are people on both sides of 'the pond' who are thin-skinned and do not need to be. The rest of the world may seem overly sensitive to the U.S. throwing her weight around, and 'Tea Partiers' and their sympathizers are increasingly hypersensitive to anyone or anything from outside trying to 'tell us what to do'.

What I would tell both sides is this. The United States of America is not an all-powerful monolith, their invasion of Iraq proved that. They cannot afford to use force like that again, and will not be able to afford it in the near future (not to say the won't if sufficiently provoked). Americans are going to have to learn to work with the rest of the world, not through it. They will have to acknowledge that international law exists and they are subject to it, perhaps to a lesser extent than most countries, but subject to it nonetheless.

Wednesday, February 06, 2013

HE'S GOLDEN!!!

I received a call at home from Paul's mother last Saturday, telling me that he won a gold medal at the Special Olympics World Winter Games in South Korea. There is a brief write-up in the local newspaper that Paul beat out an Austrian and an American in the Men's Figure Skating Singles Level 3 category. It is hard to find much information about it online, I guess that this sort of thing does not make it far in the mainstream media, even locally. But in my admittedly biased opinion, it should.

They have just arrived back in Vancouver today, and Paul and Mary Ann should be arriving back here in Halifax tomorrow. I would like to say on behalf of myself, and anyone who would care to join me, heart felt congratulations to both Paul Jocys and Mary Ann Crowley. You have done great, and made us all proud, particularly those of us who know you.

Thursday, January 24, 2013

A shout out to people I know

My good friend and fellow autist Paul Jocys is on his way to Pyeongchang, South Korea to compete for Canada at the 2013 Special Olympics World Winter Games. He is the only person from Nova Scotia who is going, and he will be in the figure skating competition. On another personal note, he is being coached by Mary Ann Crowley, who also happens to be my landlady. The games begin in 3 days, here's hoping that they make it there and back all right, and make us all proud.

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