Blind is not a bad word...

OK, so those of you that know me, know that I have a disability.  I am blind, well legally blind.  So I actually can see, at about 10 percent of normal visual acuity.  This is all my parents' fault (in that it is due to a genetic disorder).  That disorder, albinism, not only makes my skin and eyes an unearthly exotic white, it also screwed badly with the devleopment of my visual system.  On the upside, it gives me super powers, ok, that part I made up.  Anyway, it is, nowadays, not that big a deal to me.  There was a time when it bothered me a lot, but that is well in the past (being mercilessly bullied and teased as a kid will make you a bit bitter....)

People are often afriad to ask about my disability, for fear of offending me, but I am always happy to answer.  For the most part, it means that I basically see in SD while the rest of you lucky bastards see in HD.  It is not that stuff is blurry or anything, it is just not there.  There is a lack of detail.  Oh yeah, and I have no true depth perception, for this reason I hope that 3D TV fails, but that is another matter.

Me on the left at about 2, and two other kids who probably don't even have twitter accounts, much less blogs, Photo credit Leslie BrodbeckI have always had this, indeed one is born with this disorder.  Now, note something right there.  I said disorder.  I am not differently abled.  I am not challenged.  FUCK, I hate being told I am challenged.  Once back in grad school a particularly PC type told me I was visually challenged.  I said 'yeah, I wake up and think, oh boy, what a challenge, today maybe I will walk into a wall.  Oh yeah, it will be such a challenge when I can't find my glasses in the morning'. 

Brent Morris and I were talking about this very issue on the boat at PAB2011.  Brent has some deal with his leg, I don't know what it is, but he has a limp.  He was talking to someone, I am not sure who, and I heard him call himself 'crippled'.  I came over and mentinoed that I am blind.  We then both started talking about how perfectly good words were being replaced with euphemisms.  We also figured that this was being done to make people without disabilities comfortable. The funny thing was watching some of the people hear our discussion, they looked a little oh let's say uncomfortable, and I think Brent and I enjoyed that....

A nice example of the use of such euphemisms is the local agency that works with people who have Down's syndrome, autism and other developmental disorders. It is called 'Community Living Algoma'.  Now understand I think they do excellent work.  My son Jon (who has autism) gets services from them and they are first rate.  But, what the hell does 'Community Living' mean?  I always think of George Costanza saying 'you know, WE LIVE IN A SOCIETY' when I hear the name.

Now, I am not saying we can put the toothpaste back in the tube so to speak, and bring back words like 'idiot' and 'moron' (they have taken on new meanings) but what the hell is wrong with the word blind?  It means you can't see.  Believe me, if you saw how close I am right now to this damned computer you would say 'yeah he's blind'.  

I honestly believe these PC euphemisms are there so the able bodied can sanitize the fact that people like me and Brent are different, and our bodies don't quite work properly.  (I mean that is the function of the 'new' sanitized labels, I do think that the idea is one from people of good will).  I just wish people could be more fucking precise now and then. Oh and maybe ask my opinion.  (I mean the blind community here, not just me, though hell, I will speak for them if they elect me, or I have some sort of blind coup, I mean I can see a bit, so I am like a supersighted blind guy really, oh where the hell was I...)  I can't be the only blind person that finds 'visually challenged' an annoying term.

Finally, I know there are things I cannot do.  I will never drive a car (legally...) I will never be an F1 driver, I will never fly a plane and I probably won't go parasailing.  I mention the parasailing because Isabelle's brother in law told me that some blind guy in Quebec sued an instructor that would not let him, a BLIND GUY, (and I mean like 0 % vision here) solo parasail.  He won his ridiculous human rights case (I guess he was going under constitutional right to be a fucking idiot) and he soloed.  Oh and he hurt himself pretty badly....

Your Story Deserves No Attention Whatsoever: The Video

I do seem to move around a lot in this video...   Anyway, here i am doing my jolt from PAB 2011.  You should check out the PAB Youtube Channel, it is full of great content.  Thanks to Mark, Bob and the guys at the NAC.

I think I ought to say 'fuck' in academic talks more often...

Your Story Deserves No Attention Whatsoever

I recently attended PAB2011, a social media conference, where they have these very cool talks called jolts.  They are only five minutes long, and you have no slides.  (There are also other, longer talks, and I have given a longer talk at PAB before, and been on a couple of panels).  The theme this year was "Your story deserves to be told.  Well."  My jolt, as you can see from the title, is a little different....  This is the text, roughly, of what I said.  When the video is posted I will link to it here as well.

So, without further ado.....

You know, Wikipedia has an excellent policy when it comes to discussing medical issues.  Yes, Wikipedia.  This policy is called MEDRS, or the policy on reliable sources in medical articles.  It makes things quite clear.  Wikipedia articles on medical issues, like say oh the causes of autism, can only reference peer reviewed sources.  Plus, secondary sources, such as article reviews, are given much more weight than primary sources, in other words individual studies.  So, in the case of the autism cause article, the Wakefield scam, err ‘study’ is not given any weight compared to the review articles that find NO RELATIONSHIP BETWEEN VACCINES AND AUTISM.  Let me repeat that, there is NO RELATIONSHIP, get a goddamned shot, they save lives.  There are associated policies, such as WP:UNDUE and WP:FRINGE which you might find interesting as well.

Why do I mention Wikipedia, the ultimate example of social media reporting knowledge, in a talk raving against social media?  Well because there is a policy.

Giving my Jolt, photo credit Bob Goyetche

As the title indicates, there are times when the ‘other side’ of an issue is non existent, except among a bunch of morons that believe that 9/11 was caused by Disney and the international Jewish conspiracy, that nobody landed on the moon and that the 1970 Heisman trophy winner was framed and did not kill his wife.  Yet we give them a forum.

There is a dilemma here for social media though.  We all talk (or pay lip service to) the idea that we should create a community, and discuss things with each other.  We preach a sort of namby pamby inclusiveness.  We have some sort of need, or almost obsession, with hearing the other side of issues.  ‘Oh it’s an unconference, oh the law of two feet etc etc’.

I submit to you that this is a wider symptom of an anti intellectual, anti science, anti expert mentality in western culture currently. 

I am not talking about say sports, or politics.  Hell, I am a Habs fan, and while I could list a series of seemingly rational reasons to love nos golrieux and despise the evil that is the Leafs, or any other Toronto sports team, I know that that is simply taste.  Indeed, I could sit here and argue about why steak should be cooked very rare while you might like it well done, but that is a matter of taste.  As an aside, if you like well done steak you are simply a Philistine…

So, while I do now and then get infuriated with say the comment section on tsn.ca, I am rarely offended by it.  I may get angry at it, but well, as a colleague of mine once said ‘Brodbeck is an open book, and the title of that book is anger’. (Paul Dupuis, personal communication, January 2010).

One can argue the merits of something, but when one posts such gibberish, one must be called on it.  Stupid fucking ideas must be attacked and destroyed, and destroyed with evidence.  Oh did I hurt your feelings?  Too goddamned bad, you are the one that said something stupid, not me.  Please note, I am not talking about genuine inquiries here, there is always a time to teach people, but when someone says something stupid they should be publicly shamed.

We seem to have this idea that there are two sides at least, to each story and that everything is nuanced.  IT ISN’T.  There are not two sides to say oh the Creation v Evolution debate.  THERE IS NO DEBATE.  They say teach the controversy, how about this, how about we teach about how stupid and gullible people are? 

This morally and culturally relativistic post modern bullshit, this idea that ‘well that is the way they do things over there’ NO.  Female genital mutilation for example, is just wrong. 

A wonderful example of such bullshit is the anti science Huffington Post.  OK, the political stuff, as I said, that is a matter of opinion and taste mostly, so I will not speak about that.  I am talking about Jim Carrey writing about how vaccines cause autism.  And then the comments begin, all anecdotes and conspiracy theories, except for the odd voice of reason backed by data, who gets virtually shouted down by fuckwads saying ‘you don’t know, you don’t have an autistic child, you are a shill for ‘big pharma’.  You know what, I do have an autistic son, and a bit of knowledge of science in general, and psychology in particular.  I know more than you, I am smarter than you, so go fuck yourself.

I know we are not supposed to feed the trolls, and I am not talking about that, I am talking about people that are not trolls, but people that have this whole notion that their gut feeling somehow trumps data.  This insane sense of entitlement and this idea, fostered I think by social media, that all opinions are equally valid.

Could I be wrong, could you be wrong on an issue which has an answer backed by data?  Well, of course (I am here referring to you, not me, I am always correct…)  People say ‘they laughed at Gallileo’  yeah but to quote James Randi, they also laughed at Bozo the Clown.  The nice thing about science is that when the data changes so do the ideas.

Let me end on this Wi Fi does not cause cancer.  Evolution through natural selection is about as much in question as say oh gravity (but what about the other side, let’s teach intelligent falling),  Macs and PCs are both fine platforms and oh yeah, go Habs go.

Well....

It seems that I should have my own website.  Truth be told Mark Blevis threatened to squat on the domain unless I registered it.  Now, he may have been kidding, but who knows... Better safe than sorry.